May 16, 2008
By Wes Wallace
EAST PRAIRIE, Mo. - It's an experimental treatment from thousands of miles away, and it could be the only hope for a four year old from the Heartland. Daegan Archie was born blind due to a rare disorder, and there's no treatment here in the United States.
"There's no way this can be fixed, he's blind, and he's going to be blind for the rest of his life, " said Paige Archie, Daegan's mother, as she recalled a series of visits to the doctor.
Discouraging news from medical experts, giving no hope, no cure, and no where to turn, for little four-year-old Daegan.
"I didn't give up hope, but you thought in the back of your mind, when is this gonna happen, if ever," Paige questioned.
Her only alternative, new stem cell research that could help correct Daegan's blindness.
Blind from Birth
At three months old, Jason and Paige Archie noticed a problem with Daegan's vision.
"A couple of family members would say something's wrong, he's not tracking light, and wouldn't look at people when they walked by," said Paige.
A visit with the family doctor and even trips to eye specialists in Cape Girardeau couldn't diagnose what was wrong.
"At one point, they never said anything. So I asked 'can he not see', and they said 'he can't see'...I said nothing? They said 'nothing'."
The eye experts determined Daegan was born with a condition called Septo-optic Dysplasia, which means his septum and optic nerves didn't fully develop. It's a rare condition with no treatment in the U.S., forcing the Archie's not take no for an answer
"When somebody tells you something that's not going to happen or good luck, there's a one in a million chance, you don't tell me that, because I'm going to find a way, anything in my power to change," Paige said. "So that's what we're doing."
Fight for Sight
Then Paige did what any mother would do. She researched and read an article about a treatment done only in China using umbilical stem cells to help re-grow the nerves in Daegan's optic nerves. However, Daegan's family faced major medical bills of more than $40,000, plus an expensive trip to China.
"I have to work full time and my husband works full time, we have two kids, so we thought, 'How are we going to find time to do fundraiser's?," said Paige. "But you find time."
Of course the procedure is very experimental, but what's so remarkable, many people in East Prairie, Bertrand, and all across the Heartland opened their hearts and wallets to help with a controversial procedure. After hearing Daegan's story, you can understand why so many want to help his fight for sight.
A Community Cares
"Everyone wants to help...they all want to be part of this miracle that we think will take place, " said Loretta Peters, a relative and major fundraiser for Daegan's Fight for Sight.
We caught up with Peters as she was organizing a fish fry and auction. She tells us she's overwhelmed by the outpouring of support for little Daegan.
"When you look into those big beautiful eyes and you realize they can't see, they've never seen light or his mother's face, how can you not want to help?" asked Peters.
Paige and Jason Archie are fully aware of the community contribution to their cause and are fully grateful.
"I just want my baby to see me, see his family, and see all these people who've been helping him," Paige added. "I want him to be able to look at those people and say 'thank you'."
Stem Cell Controversy
We need to point out, the stem cells used come from umbilical cords, and not from embryos. Even so, there's still a lot of debate about the effectiveness of the procedure.
However, Rylea Bartlett, a six year old from Webb City, Missouri had a very similar problem just like Daegan. She had the procedure done in China recently, and she's now able to see with glasses. Her vision is not perfect, but when she realized she saw her mother's face for the first time, she said, "Mommy, you're beautiful." Later, she looked in the mirror and didn't understand she saw her reflection, so she asked her mother, "Who is that pretty girl?" So far she's one of 13 children who gained vision after the operation. We talked to Rylea's eye doctor, and he calls it a miracle. Dr. Larry Brothers explains he understands there's controversy, but he saw Rylea when she was blind and the fact she can see now is amazing.
Paige, her mother, and Daegan will fly to China later this month for the therapy at the same hospital where Rylea had her treatment. We'll keep you updated on what happens next. You can keep track of the progress from China on Daegan's web site.
WorldNow and KFVS12
Source: kfvs12.com http://www.checkbiotech.org/orphan_News_people.aspx?infoId=3366
Showing posts with label Septo Optic Dysplasia. Show all posts
Showing posts with label Septo Optic Dysplasia. Show all posts
Friday, May 16, 2008
Friday, May 9, 2008
Lighthouse donation could help Weston see for first time
Thursday, 08 May 2008
Three-year-old Weston Wright, and his mother Christina recently received a donation from the San Antonio Lighthouse for the Blind. Photo by Steve Valdez
By Noi Mahoney Editor
No one understands life as a blind person better than the employees at the San Antonio Lighthouse for the Blind. So when the possibility arose of giving 3-year-old Weston Wright his eyesight, employees at the Lighthouse jumped right in.
Last week, employees at the Lighthouse donated $5,384 to Wright. The money will help Wright and his family travel to China for a miracle operation that may help restore his vision.
“It is a good feeling to be able to help,” said Nancy Lipton, spokeswoman for the Lighthouse. “A lot of our employees will never regain their sight. But to be able to give someone the gift of sight, it’s amazing.”
Wright has been blind since birth, suffering from a condition known as Septo Optic Dysplasia. It is a rare condition causing abnormalities of the brain and a poor functioning pituitary gland.
“It is very rare, but we are seeing more and more cases,” said Christina Wright, Weston’s mother. “Weston was about 4 months old when he was diagnosed with it. The doctor said your child is blind and will never see. It was an absolute shock.”
The debilitating condition has left Weston Wright with a multitude of other problems. He is undersized for a 3-year-old because his body doesn’t produce enough growth hormones.
The boy must also endure blood work and multiple medications every three months.
Christina Wright, and her husband Marcus were told by one doctor that there was no procedure or treatment that could help Weston. Several months ago however, Christina heard about a $28,000 procedure involving umbilical cord stem cell therapy that might help Weston.
The procedure, which involves stem cell injections, has been used in the U.S., but not for Septo Optic Dysplasia. Weston Wright would have to travel to the Chinese city of Qingdao to receive it.
“I found about it on one of those ‘Nation in the News’ TV shows,” Christina Wright said.
It involves a series of injections of stem cells into Weston’s spinal cord. It is hoped the stem cells will stimulate Weston’s optic nerves and pituitary gland.
To get to China, the family needed to raise $40,000 for the treatment that could give Weston his sight and the hope of a better life.
The Wrights, who also have an 8-year-old son named Nicholas, said when they first heard of the operation and its costs, they “prayed.”
“The lord brought us to this situation,” Christina Wright said. “Then we started planning.”
Friends held a fundraiser for Weston Wright in February. Then, a TV station picked up Weston’s story on March 30. That’s when employees at the Lighthouse heard about Weston’s plight.
“We decided we would hold an internal fundraiser,” Lipton said. “We told our employees, whatever you raise, the company will match.”
The Lighthouse was eventually able to donate $5,384 for Weston’s cause. The funds helped the Wright family meet its total of $40,000 for the trip.
The Lighthouse employs about 500 people, about 150 of whom are vision-impaired. It is located on the South Side at 2305 Roosevelt Ave.
The Lighthouse makes fleece lining on parkas for the Navy, chin straps for helmets for the Army, as well as blankets for Boeing Co. and pens for the military.
“A lot of our employees live on the South Side,” Lipton said. “These are tough economic times. Some of our employees don’t have a lot of money to spare, but they did what they could.”
Weston Wright and his family leave for China on July 1. They will return by July 30.
“I just want to say thanks to everyone for praying for us and supporting us,” Christina Wright said. “Everyone’s help allowed us to change Weston’s life.”
http://www.clickitsa.com/content/view/20012/393/
Thursday, May 1, 2008
Money Floods in for Little Megan
MONEY FLOODS IN FOR LITTLE MEGAN
Andersonstown News Monday
by Gemma Burns
The parents of a blind little girl desperate to raise funds for pioneering surgery that could partially restore her sight say they have been "overwhelmed" by the spirit of generosity in West Belfast.
St James' mum Leanne Traynor said the young family are stunned that the level of support readers of the Andersonstown News have shown them has meant they have raised £10,000 in the space of just eight days.
Little Megan Traynor was born with septo-optic dysplasia, an extremely rare brain condition which means she is blind, suffering from epilepsy and diabetes, as well as having learning difficulties and a growth hormone deficiency. Her only hope of being able to see is high-tech stem cell therapy being pioneered in China using cells from an umbilical cord.
The family needed to raise over £30,000 to fund the operation and since the story first appeared in the Andersonstown News they have been inundated with donations and outpourings of support from the community.
Mum Leanne, who is pregnant with her second child, said most of the cash and offers of help to them has come from readers of this newspaper.
"Our story appeared in the Andersonstown News two weeks ago and eight days ago we got Megan's charity account up and running and there is £10,000 in it already, we just can't believe it," she said.
"The amount of people phoning and offering help has just been amazing, we can't thank them enough. It seems that most of the people who are donating are from the local area and read it in the Andersonstown News, it’s been fantastic. Fold residents went round doors collecting money, I know even a blind woman herself went out to collect.
Doorsteps
"My next door neighbour Cecilia went out round the doors with her friend and got over £1,000 just on doorsteps alone and there have been so many more people who have given generously that we can't thank them all individually but we are overwhelmed by how good they have been.
"The shop Cardland are going to give us 50 per cent of the profits they make in a weekend in July and staff of Bon Marché are going to fundraise for us too. It’s just unbelievable how good people are."
The family are now desperate to raise the other £20,000 that could help five-year-old Megan have a better quality of life. They have arranged a fundraising night in the West club with all proceeds going to Megan's appeal.
"The operation would make all the difference to Megan who has been so brave through everything. If we could get the rest of the money raised we would just be over the moon," said Leanne.
"We are having a night in the West Club on 6 June and the tickets are just £5 with free entertainment, It would be great if we could get all the tickets sold to help the appeal. I can't thank the people of West Belfast enough for all they have done for us."
Tickets for the fundraising night in the West club are available in the club now priced £5. To donate to Megan's appeal at the Halifax building society her account number is 00789720 and sort-code 110976, account name Megan Traynor.
http://www.belfastmedia.com/home_article.php?ID=1215
Andersonstown News Monday
by Gemma Burns
The parents of a blind little girl desperate to raise funds for pioneering surgery that could partially restore her sight say they have been "overwhelmed" by the spirit of generosity in West Belfast.
St James' mum Leanne Traynor said the young family are stunned that the level of support readers of the Andersonstown News have shown them has meant they have raised £10,000 in the space of just eight days.
Little Megan Traynor was born with septo-optic dysplasia, an extremely rare brain condition which means she is blind, suffering from epilepsy and diabetes, as well as having learning difficulties and a growth hormone deficiency. Her only hope of being able to see is high-tech stem cell therapy being pioneered in China using cells from an umbilical cord.
The family needed to raise over £30,000 to fund the operation and since the story first appeared in the Andersonstown News they have been inundated with donations and outpourings of support from the community.
Mum Leanne, who is pregnant with her second child, said most of the cash and offers of help to them has come from readers of this newspaper.
"Our story appeared in the Andersonstown News two weeks ago and eight days ago we got Megan's charity account up and running and there is £10,000 in it already, we just can't believe it," she said.
"The amount of people phoning and offering help has just been amazing, we can't thank them enough. It seems that most of the people who are donating are from the local area and read it in the Andersonstown News, it’s been fantastic. Fold residents went round doors collecting money, I know even a blind woman herself went out to collect.
Doorsteps
"My next door neighbour Cecilia went out round the doors with her friend and got over £1,000 just on doorsteps alone and there have been so many more people who have given generously that we can't thank them all individually but we are overwhelmed by how good they have been.
"The shop Cardland are going to give us 50 per cent of the profits they make in a weekend in July and staff of Bon Marché are going to fundraise for us too. It’s just unbelievable how good people are."
The family are now desperate to raise the other £20,000 that could help five-year-old Megan have a better quality of life. They have arranged a fundraising night in the West club with all proceeds going to Megan's appeal.
"The operation would make all the difference to Megan who has been so brave through everything. If we could get the rest of the money raised we would just be over the moon," said Leanne.
"We are having a night in the West Club on 6 June and the tickets are just £5 with free entertainment, It would be great if we could get all the tickets sold to help the appeal. I can't thank the people of West Belfast enough for all they have done for us."
Tickets for the fundraising night in the West club are available in the club now priced £5. To donate to Megan's appeal at the Halifax building society her account number is 00789720 and sort-code 110976, account name Megan Traynor.
http://www.belfastmedia.com/home_article.php?ID=1215
Sunday, April 20, 2008
Treatment helps child see
Treatment helps child see
By DONNA HICKMAN
(Published April 20, 2008)
BELGRADE, Mo. — When 6-year-old Lydia Olmsted wakes up at her grandmother's home in Belgrade, she sits up in bed and tells her, "Daylight Granny, time to get up!" It's music to Joan Olmsted's ears.
For the first time, Lydia is seeing light like the sun bursting through the windows at sunrise. She has Septo-Optic Dysplasia. That means her eyes don't have enough nerve fibers for the brain to receive visual cues from the eyes.
But thanks to stem cell treatments in China in January, Lydia can see light.
It started with the lights still on the Christmas trees in the hospital where she was treated. Lydia could see them. And what light she could see did not hurt her eyes as it did before.
"I can see the light under the bathroom door, but I can't see colors," Lydia explained in a visit to the Daily Journal earlier this month. "I'd like to see the color yellow because that's my favorite."
The stem cell treatment is experimental and is not performed in the U.S. Joan said until Lydia's mom, Juli, found out about it, she didn't know there was anything that could help her daughter see. A little girl who was the first to be treated 8 month ago is now seeing colors.
"We are not sure yet what the outcome will be," said Juli. "The process will take at least a year. She is only the seventh child to do this as part of a case study. They don't guarantee anything."
The stem cells are thought to help the body repair itself. As Juli explains it, the optic tissue in Lydia's eyes had become atrophied from lack of use. The stem cells will become Lydia's optic nerve cells.
The company conducting the study is Beike BioTech.
There is a lot of medical follow-up to be done and Lydia expected to need expensive hyperbaric treatments when she returned, but those are on hold for now. Still, funds are needed to pay the additional medical costs. Another trip to China could be needed next year. Lydia has regular cat scans and uses eye drops as doctors check to see if her optic nerve is developing.
The Park Hills Lions Club gave $1,000 to Lydia's Lights, the name of her fundraising effort.
Lydia and her mother live in Columbia, but Lydia spent her spring break week in Belgrade with her grandmother. It's where Juli grew up.
Since the story first ran in the Daily Journal on Jan. 9, the family has been contacted by others who have loved ones with the same eye disorder. Lydia is mystified by all the interest in her.
"One day, we were getting ready to go to Bismarck and somebody called and they were wondering how I was doing," she recalled. Her grandmother explained the caller was someone she knew that Lydia did not.
"But there have been other calls and e-mails from people we don't know," said Joan. "People are so generous and so concerned. Everywhere I go, people say, 'Hello, how's Lydia?'"
For a month, doctors put umbilical stem cells into Lydia's body through an intravenous injection and four injections into her spine. It cost about $18,000. Such experimental treatments done in China have come under fire from some medical researchers in the U.S.
They caution the results have not been proven. Juli said she knew about all the criticism as she arranged for her daughter's treatment. She said she tells others considering their options to carefully weigh the pros and cons. She believes it was right for Lydia. She says she has faith in the process.
After the second treatment, Lydia began to say she saw the lights on the Christmas tree. Juli was elated!
"Pretty quickly, I saw her pupils begin to react to light appropriately as they are supposed to do," said Juli. "She notices more light. It used to be she could see it only a foot away, now she can see it 6-8 feet away. She can see a flashlight and point to it."
All the medical attention has prompted her to make up her own IV kit using a hair clip, a plastic watch band, a couple of chenille pipe cleaners, and a Luna bar wrapper.
"She gives us IVs often because she had so many in China," said Joan.
Lydia admits when doctors began the stem cell treatment, they told her it wouldn't hurt. But it did. So, when her treatment was over, she went to the doctors and nurses with her IV kit and told them it wouldn't hurt when she used it on them.
Lydia has always loved music and connects with singers and personalities. When she was 3 and 4, she was a fan of the group Alabama. At 4 or 5, she fell in love with Toby Keith, whom she has always called "my boy."
By the time she turned 5, she had replaced Keith with Ryan Seacrest. His is the face she'd most like to see.
"I listen to his show on the radio and I like American Idol," she explained.
She is also a dancer and her grandmother says she never saw anyone who could twirl as long as Lydia can.
She loves to ride horses and "go farming" with Joan and Lydia's uncle Chuck.
Lydia writes Braille and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.
Juli is so proud of her daughter, calling her a "very adjusted, very trusting, amazing little girl."
"You have to have a little bit of a dream in order to do this," Juli explained. "We pray for full sight and function, but at the same time, we take it step by step."
http://www.fortmilltimes.com/124/story/138669.html
By DONNA HICKMAN
(Published April 20, 2008)
BELGRADE, Mo. — When 6-year-old Lydia Olmsted wakes up at her grandmother's home in Belgrade, she sits up in bed and tells her, "Daylight Granny, time to get up!" It's music to Joan Olmsted's ears.
For the first time, Lydia is seeing light like the sun bursting through the windows at sunrise. She has Septo-Optic Dysplasia. That means her eyes don't have enough nerve fibers for the brain to receive visual cues from the eyes.
But thanks to stem cell treatments in China in January, Lydia can see light.
It started with the lights still on the Christmas trees in the hospital where she was treated. Lydia could see them. And what light she could see did not hurt her eyes as it did before.
"I can see the light under the bathroom door, but I can't see colors," Lydia explained in a visit to the Daily Journal earlier this month. "I'd like to see the color yellow because that's my favorite."
The stem cell treatment is experimental and is not performed in the U.S. Joan said until Lydia's mom, Juli, found out about it, she didn't know there was anything that could help her daughter see. A little girl who was the first to be treated 8 month ago is now seeing colors.
"We are not sure yet what the outcome will be," said Juli. "The process will take at least a year. She is only the seventh child to do this as part of a case study. They don't guarantee anything."
The stem cells are thought to help the body repair itself. As Juli explains it, the optic tissue in Lydia's eyes had become atrophied from lack of use. The stem cells will become Lydia's optic nerve cells.
The company conducting the study is Beike BioTech.
There is a lot of medical follow-up to be done and Lydia expected to need expensive hyperbaric treatments when she returned, but those are on hold for now. Still, funds are needed to pay the additional medical costs. Another trip to China could be needed next year. Lydia has regular cat scans and uses eye drops as doctors check to see if her optic nerve is developing.
The Park Hills Lions Club gave $1,000 to Lydia's Lights, the name of her fundraising effort.
Lydia and her mother live in Columbia, but Lydia spent her spring break week in Belgrade with her grandmother. It's where Juli grew up.
Since the story first ran in the Daily Journal on Jan. 9, the family has been contacted by others who have loved ones with the same eye disorder. Lydia is mystified by all the interest in her.
"One day, we were getting ready to go to Bismarck and somebody called and they were wondering how I was doing," she recalled. Her grandmother explained the caller was someone she knew that Lydia did not.
"But there have been other calls and e-mails from people we don't know," said Joan. "People are so generous and so concerned. Everywhere I go, people say, 'Hello, how's Lydia?'"
For a month, doctors put umbilical stem cells into Lydia's body through an intravenous injection and four injections into her spine. It cost about $18,000. Such experimental treatments done in China have come under fire from some medical researchers in the U.S.
They caution the results have not been proven. Juli said she knew about all the criticism as she arranged for her daughter's treatment. She said she tells others considering their options to carefully weigh the pros and cons. She believes it was right for Lydia. She says she has faith in the process.
After the second treatment, Lydia began to say she saw the lights on the Christmas tree. Juli was elated!
"Pretty quickly, I saw her pupils begin to react to light appropriately as they are supposed to do," said Juli. "She notices more light. It used to be she could see it only a foot away, now she can see it 6-8 feet away. She can see a flashlight and point to it."
All the medical attention has prompted her to make up her own IV kit using a hair clip, a plastic watch band, a couple of chenille pipe cleaners, and a Luna bar wrapper.
"She gives us IVs often because she had so many in China," said Joan.
Lydia admits when doctors began the stem cell treatment, they told her it wouldn't hurt. But it did. So, when her treatment was over, she went to the doctors and nurses with her IV kit and told them it wouldn't hurt when she used it on them.
Lydia has always loved music and connects with singers and personalities. When she was 3 and 4, she was a fan of the group Alabama. At 4 or 5, she fell in love with Toby Keith, whom she has always called "my boy."
By the time she turned 5, she had replaced Keith with Ryan Seacrest. His is the face she'd most like to see.
"I listen to his show on the radio and I like American Idol," she explained.
She is also a dancer and her grandmother says she never saw anyone who could twirl as long as Lydia can.
She loves to ride horses and "go farming" with Joan and Lydia's uncle Chuck.
Lydia writes Braille and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.
Juli is so proud of her daughter, calling her a "very adjusted, very trusting, amazing little girl."
"You have to have a little bit of a dream in order to do this," Juli explained. "We pray for full sight and function, but at the same time, we take it step by step."
http://www.fortmilltimes.com/124/story/138669.html
Monday, March 31, 2008
Child's sight improves after experimental treatment
Helping Lydia see the light
By DONNA HICKMANDaily Journal Staff Writer
Mar 31, 2008 - 10:44:19 CDT
Video Clip(s)
·
Meet Lydia and hear her talk about her life.
When 6-year-old Lydia Olmsted wakes up at her grandmother’s home in Belgrade this week, she sits up in bed and tells her, “Daylight Granny, time to get up!” It’s music to Joan Olmsted’s ears.For the first time, Lydia is seeing light like the sun bursting through the windows at sunrise. She has Septo-Optic Dysplasia. That means her eyes don’t have enough nerve fibers for the brain to receive visual cues from the eyes. But thanks to stem cell treatments in China in January, Lydia can see light. It started with the lights still on the Christmas trees in the hospital where she was treated. Lydia could see them. And what light she could see did not hurt her eyes as it did before.“I can see the light under the bathroom door, but I can’t see colors,” Lydia explained in a visit to the Daily Journal Wednesday. “I’d like to see the color yellow because that’s my favorite.”The stem cell treatment is experimental and is not performed in the U.S. Joan said until Lydia’s mom, Juli, found out about it, she didn’t know there was anything that could help her daughter see. A little girl who was the first to be treated 8 month ago is now seeing colors.“We are not sure yet what the outcome will be,” said Juli, interviewed by phone. “The process will take at least a year. She is only the 7th child to do this as part of a case study. They don’t guarantee anything.”The stem cells are thought to help the body repair itself. As Juli explains it, the optic tissue in Lydia’s eyes had become atrophied from lack of use. The stem cells will become Lydia’s optic nerve cells.The company conducting the study is Beike BioTech. Find out more about the procedure at http://www.stemcellchina.com/.There is a lot of medical follow-up to be done and Lydia expected to need expensive hyperbaric treatments when she returned, but those are on hold for now. Still, funds are needed to pay the additional medical costs. Another trip to China could be needed next year. Lydia has regular cat scans and uses eye drops as doctors check to see if her optic nerve is developing.The Park Hills Lions Club gave $1,000 to Lydia’s Lights, the name of her fundraising effort.Lydia and her mother live in Columbia, but Lydia spent her spring break week in Belgrade with her grandmother. It’s where Juli grew up.Since the story first ran in the Daily Journal on Jan. 9, the family has been contacted by others who have loved ones with the same eye disorder. Lydia is mystified by all the interest in her.“One day, we were getting ready to go to Bismarck and somebody called and they were wondering how I was doing,” she recalled. Her grandmother explained the caller was someone she knew that Lydia did not.“But there have been other calls and e-mails from people we don’t know,” said Joan. “People are so generous and so concerned. Everywhere I go, people say, ‘Hello, how’s Lydia?’”For a month, doctors put umbilical stem cells into Lydia’s body through an intravenous injection and four injections into her spine. It cost about $18,000. Such experimental treatments done in China have come under fire from some medical researchers in the U.S.They caution the results have not been proven. Juli said she knew about all the criticism as she arranged for her daughter’s treatment. She said she tells others considering their options to carefully weigh the pros and cons. She believes it was right for Lydia. She says she has faith in the process.After the second treatment, Lydia began to say she saw the lights on the Christmas tree. Juli was elated!“Pretty quickly, I saw her pupils begin to react to light appropriately as they are supposed to do,” said Juli. “She notices more light. It used to be she could see it only a foot away, now she can see it 6-8 feet away. She can see a flashlight and point to it.”All the medical attention has prompted her to make up her own IV kit using a hair clip, a plastic watch band, a couple of chenille pipe cleaners, and a Luna bar wrapper.“She gives us IVs often because she had so many in China,” said Joan.Lydia admits when doctors began the stem cell treatment, they told her it wouldn’t hurt. But it did. So, when her treatment was over, she went to the doctors and nurses with her IV kit and told them it wouldn’t hurt when she used it on them.Lydia has always loved music and connects with singers and personalities. When she was 3 and 4, she was a fan of the group, “Alabama.” At 4 or 5, she fell in love with Toby Keith who she has always called "my boy."By the time she turned 5, she had replaced Keith with Ryan Secrest. His is the face she’d most like to see.“I listen to his show on the radio and I like American Idol,” she explained. She is also a dancer and her grandmother says she never saw anyone who could twirl as long as Lydia can.She loves to ride horses and “go farming” with Joan and Lydia’s uncle Chuck. Lydia writes Braille and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.Juli is so proud of her daughter, calling her a “very adjusted, very trusting, amazing little girl.”“You have to have a little bit of a dream in order to do this,” Juli explained. “We pray for full sight and function, but at the same time, we take it step by step.”
http://www.mydjconnection.com/articles/2008/03/31/news/doc47f1027db74a5062745795.txt
By DONNA HICKMANDaily Journal Staff Writer
Mar 31, 2008 - 10:44:19 CDT
Video Clip(s)
·
Meet Lydia and hear her talk about her life.
When 6-year-old Lydia Olmsted wakes up at her grandmother’s home in Belgrade this week, she sits up in bed and tells her, “Daylight Granny, time to get up!” It’s music to Joan Olmsted’s ears.For the first time, Lydia is seeing light like the sun bursting through the windows at sunrise. She has Septo-Optic Dysplasia. That means her eyes don’t have enough nerve fibers for the brain to receive visual cues from the eyes. But thanks to stem cell treatments in China in January, Lydia can see light. It started with the lights still on the Christmas trees in the hospital where she was treated. Lydia could see them. And what light she could see did not hurt her eyes as it did before.“I can see the light under the bathroom door, but I can’t see colors,” Lydia explained in a visit to the Daily Journal Wednesday. “I’d like to see the color yellow because that’s my favorite.”The stem cell treatment is experimental and is not performed in the U.S. Joan said until Lydia’s mom, Juli, found out about it, she didn’t know there was anything that could help her daughter see. A little girl who was the first to be treated 8 month ago is now seeing colors.“We are not sure yet what the outcome will be,” said Juli, interviewed by phone. “The process will take at least a year. She is only the 7th child to do this as part of a case study. They don’t guarantee anything.”The stem cells are thought to help the body repair itself. As Juli explains it, the optic tissue in Lydia’s eyes had become atrophied from lack of use. The stem cells will become Lydia’s optic nerve cells.The company conducting the study is Beike BioTech. Find out more about the procedure at http://www.stemcellchina.com/.There is a lot of medical follow-up to be done and Lydia expected to need expensive hyperbaric treatments when she returned, but those are on hold for now. Still, funds are needed to pay the additional medical costs. Another trip to China could be needed next year. Lydia has regular cat scans and uses eye drops as doctors check to see if her optic nerve is developing.The Park Hills Lions Club gave $1,000 to Lydia’s Lights, the name of her fundraising effort.Lydia and her mother live in Columbia, but Lydia spent her spring break week in Belgrade with her grandmother. It’s where Juli grew up.Since the story first ran in the Daily Journal on Jan. 9, the family has been contacted by others who have loved ones with the same eye disorder. Lydia is mystified by all the interest in her.“One day, we were getting ready to go to Bismarck and somebody called and they were wondering how I was doing,” she recalled. Her grandmother explained the caller was someone she knew that Lydia did not.“But there have been other calls and e-mails from people we don’t know,” said Joan. “People are so generous and so concerned. Everywhere I go, people say, ‘Hello, how’s Lydia?’”For a month, doctors put umbilical stem cells into Lydia’s body through an intravenous injection and four injections into her spine. It cost about $18,000. Such experimental treatments done in China have come under fire from some medical researchers in the U.S.They caution the results have not been proven. Juli said she knew about all the criticism as she arranged for her daughter’s treatment. She said she tells others considering their options to carefully weigh the pros and cons. She believes it was right for Lydia. She says she has faith in the process.After the second treatment, Lydia began to say she saw the lights on the Christmas tree. Juli was elated!“Pretty quickly, I saw her pupils begin to react to light appropriately as they are supposed to do,” said Juli. “She notices more light. It used to be she could see it only a foot away, now she can see it 6-8 feet away. She can see a flashlight and point to it.”All the medical attention has prompted her to make up her own IV kit using a hair clip, a plastic watch band, a couple of chenille pipe cleaners, and a Luna bar wrapper.“She gives us IVs often because she had so many in China,” said Joan.Lydia admits when doctors began the stem cell treatment, they told her it wouldn’t hurt. But it did. So, when her treatment was over, she went to the doctors and nurses with her IV kit and told them it wouldn’t hurt when she used it on them.Lydia has always loved music and connects with singers and personalities. When she was 3 and 4, she was a fan of the group, “Alabama.” At 4 or 5, she fell in love with Toby Keith who she has always called "my boy."By the time she turned 5, she had replaced Keith with Ryan Secrest. His is the face she’d most like to see.“I listen to his show on the radio and I like American Idol,” she explained. She is also a dancer and her grandmother says she never saw anyone who could twirl as long as Lydia can.She loves to ride horses and “go farming” with Joan and Lydia’s uncle Chuck. Lydia writes Braille and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.Juli is so proud of her daughter, calling her a “very adjusted, very trusting, amazing little girl.”“You have to have a little bit of a dream in order to do this,” Juli explained. “We pray for full sight and function, but at the same time, we take it step by step.”
http://www.mydjconnection.com/articles/2008/03/31/news/doc47f1027db74a5062745795.txt
Monday, January 7, 2008
Miracle in the Making
COLUMBIA - Six-year old Lydia Olmsted has never seen her mother's face. But her mother's love is wrapped all around her.
The two share their secrets, their laugther, and their fears. It's a love they say is blind.
Doctors diagnosed Lydia with Septo-optic Dysplagia. It's a rare disorder causing the abnormal development of the optic disk, often causing blindness.
"They told us she had Optic Nerve Dysplagia and was blind. There was no treatment," explained Juli Olmsted, Lydia's mother.
The Olmsteds adjusted to the disorder the best they could until they found hope from the most unusual source. It was an article in the National Inquirer that said a blind girl could now see.
"There was finally some hope. When your child is first diagnosed they always tell you there's nothing to do here are resources," said Juli. "It's difficult when you find out that and then all the sudden there's treatment options and there's hope."
After researching the article Juli contacted the doctors who restored sight.
"We told her there were some doctors in China that could make people like here able to see with her eyes. I asked her to see if she would be interested in trying that," said Julie. "We have fairly adult type conversation you can't really pull the wool over her eyes."
The Olmsteds leave for China this month, where Lydia will under go five stem-cell treatments. Lydia says she's not scared, she's always been brave, and she has her very "brave lion" to keep her safe. \
"I'm excited to fly on the plane and getting to see," said Lydia. She already knows what she wants to see.
"I asked what whe would like to see with her eyes she said bugs. And then I asked her who she would like to see if she could see a person. This kind of shows were I stand, she said Ryan Seacrest," laughed Juli.
"Well, because, I have a crush on him," said Lydia.
They say their only worry is keeping their carry on bags under 50 pounds.
And the rest... well they'll just have to wait and see.
Click here for video link: http://www.komu.com/satellite/SatelliteRender/KOMU.com/ba8a4513-c0a8-2f11-0063-9bd94c70b769/52402cdd-80ce-0971-0183-ac0f42dfed7c
The two share their secrets, their laugther, and their fears. It's a love they say is blind.
Doctors diagnosed Lydia with Septo-optic Dysplagia. It's a rare disorder causing the abnormal development of the optic disk, often causing blindness.
"They told us she had Optic Nerve Dysplagia and was blind. There was no treatment," explained Juli Olmsted, Lydia's mother.
The Olmsteds adjusted to the disorder the best they could until they found hope from the most unusual source. It was an article in the National Inquirer that said a blind girl could now see.
"There was finally some hope. When your child is first diagnosed they always tell you there's nothing to do here are resources," said Juli. "It's difficult when you find out that and then all the sudden there's treatment options and there's hope."
After researching the article Juli contacted the doctors who restored sight.
"We told her there were some doctors in China that could make people like here able to see with her eyes. I asked her to see if she would be interested in trying that," said Julie. "We have fairly adult type conversation you can't really pull the wool over her eyes."
The Olmsteds leave for China this month, where Lydia will under go five stem-cell treatments. Lydia says she's not scared, she's always been brave, and she has her very "brave lion" to keep her safe. \
"I'm excited to fly on the plane and getting to see," said Lydia. She already knows what she wants to see.
"I asked what whe would like to see with her eyes she said bugs. And then I asked her who she would like to see if she could see a person. This kind of shows were I stand, she said Ryan Seacrest," laughed Juli.
"Well, because, I have a crush on him," said Lydia.
They say their only worry is keeping their carry on bags under 50 pounds.
And the rest... well they'll just have to wait and see.
Click here for video link: http://www.komu.com/satellite/SatelliteRender/KOMU.com/ba8a4513-c0a8-2f11-0063-9bd94c70b769/52402cdd-80ce-0971-0183-ac0f42dfed7c
Wednesday, January 2, 2008
Rylea Update and DVD on ONH/SOD
Here is just a very quick up date on our lovely Miss Rylea who has just had another evaluation with Dr. Brothers. She is now able to see colors!! 
We have suspected for the past couple of months that she was indeed seeing some color but now we know for certain that she is. Even better her vision with her glasses on has improved since just a few weeks ago and is now rated at 20/1200. It is unknown how much difference the glasses are making for her but Dr. Bothers feels they might be “sharpening” the images for her.
Rylea is now 5 months post treatment and is still going strong with her continual improvements in vision. She has not done any Hyperbarics at this point.
The photos shown here were all taken this past November while we were in Florida at the Cord Blood Medical Awareness Rally which was organized by Cameron Peterson's Grandmother Carol.
We had families from not only Florida but from all over the United States. Some of the parents were able to talk about what the treatments derived from Umbilical Cord Blood meant to them and their children.
............This young man took center stage after the "adults" were done and belted out a couple of amazing tunes for our visitors. He and his family will be heading for China this summer. They said they had their doubts until that day in the park when they saw for themselves that not only was I a real person but so were the other children that had already been treated and the results they had seen were measurable and concrete.
Along with me during my three days in Florida was a film crew brought in by Wealth TV. The crew spent several hours each day recording my one on one sessions with families and conducting their own interviews.
During those 3 days meeting and talking with parents one on one. I did personal evaluations of their children and reviewed the medical documents brought to me by the parents. While I was not able to tell all the parents that their children could be treated I think every one of them found valuable information and some answers.
................I have also just received my copy of the Wealth TV Special on Optic Nerve Hypoplasia which aired nation wide this past December 19th.
I do have permission from the network producer to make copies of it for parents and send those copies out but I am not allowed to post it on the Internet. This is a 30 minute special covering the treatment of ONH with stem cells and features many of the children who attended the Medical Awareness Rally in Florida. Rylea and Cameron as well as another child Tre who will be heading to China for treatment and their cases were those featured in the piece.
For those inside the USA and Canada who would like to have a copy of this DVD please let me know and I will be happy to mail one out to you free of charge. Just send me via my personal email address your full name and mailing address.
My emails are:
kirshner.ross@gmail.com
kirsh@vaden.com
kirshner@beikebiotech.com kirshner@stemcellschina.com
We have suspected for the past couple of months that she was indeed seeing some color but now we know for certain that she is. Even better her vision with her glasses on has improved since just a few weeks ago and is now rated at 20/1200. It is unknown how much difference the glasses are making for her but Dr. Bothers feels they might be “sharpening” the images for her.
Rylea is now 5 months post treatment and is still going strong with her continual improvements in vision. She has not done any Hyperbarics at this point.
The photos shown here were all taken this past November while we were in Florida at the Cord Blood Medical Awareness Rally which was organized by Cameron Peterson's Grandmother Carol.
We had families from not only Florida but from all over the United States. Some of the parents were able to talk about what the treatments derived from Umbilical Cord Blood meant to them and their children.
............This young man took center stage after the "adults" were done and belted out a couple of amazing tunes for our visitors. He and his family will be heading for China this summer. They said they had their doubts until that day in the park when they saw for themselves that not only was I a real person but so were the other children that had already been treated and the results they had seen were measurable and concrete.
Along with me during my three days in Florida was a film crew brought in by Wealth TV. The crew spent several hours each day recording my one on one sessions with families and conducting their own interviews.
During those 3 days meeting and talking with parents one on one. I did personal evaluations of their children and reviewed the medical documents brought to me by the parents. While I was not able to tell all the parents that their children could be treated I think every one of them found valuable information and some answers.
................I have also just received my copy of the Wealth TV Special on Optic Nerve Hypoplasia which aired nation wide this past December 19th.
I do have permission from the network producer to make copies of it for parents and send those copies out but I am not allowed to post it on the Internet. This is a 30 minute special covering the treatment of ONH with stem cells and features many of the children who attended the Medical Awareness Rally in Florida. Rylea and Cameron as well as another child Tre who will be heading to China for treatment and their cases were those featured in the piece.
For those inside the USA and Canada who would like to have a copy of this DVD please let me know and I will be happy to mail one out to you free of charge. Just send me via my personal email address your full name and mailing address.
My emails are:
kirshner.ross@gmail.com
kirsh@vaden.com
kirshner@beikebiotech.com kirshner@stemcellschina.com
Sunday, December 30, 2007
Praying for a brighter future
Praying for a brighter future
Stem-cell treatment may give a young girl vision
12/26/07Erma Harris Managing Editor
Kacie Diane Sallee was welcomed into the world by her parents, Miranda and Stephen Sallee, on April 27, 1999. Although she had a problem during her first few days of life keeping her blood sugar level up, she was soon ready to go home with her proud parents.
“She had to stay in the hospital until she was a week old,” Miranda said. “But then, we got to take our healthy, happy baby home. She did get jaundice like most newborn babies but eventually got over it. Life was good.”
When Kacie was almost three months old a comment by a family member drew attention to a problem the young parents had not seen.
“I was talking to my Grandma Betty and Aunt Pat at church when they told me they didn’t think Kacie was using her eyes or acting like they thought she should be,” Miranda said. “I was so hurt. How dare they tell me something was wrong with my baby.”
Miranda made an appointment with Kacie’s pediatrician.
“When he asked me why we were there, I told him I was there to make my grandma happy,” Miranda said. “He told me Kacie would need to see an eye doctor.”
The eye doctor didn’t tell the Sallees what they thought they would hear – an affirmation that nothing was wrong with their baby girl. Instead the doctor said that something wasn’t right and sent them to Arkansas Children’s Hospital in Little Rock. The news they received was anything but comforting.
“We met with Dr. Brodsky at ACH,” Miranda said. “He told us that Kacie was blind and that she had something called Septo-Optic Dysplasia. When we found out that Kacie couldn’t see we were so hurt. I didn’t like to talk about it. I guess I pretended nothing was wrong. I asked myself, ‘Is this my fault? Did I do something wrong? Why did this happen to my baby?’ ”
A child with Septo-Optic Dysplasia (SOD) has under developed nerves from the eye to the brain. People with SOD may also have abnormalities of the brain and a poorly functioning pituitary gland. This condition is also known as Optic Nerve Hypoplasia and DeMorsier’s Syndrome. According to several medical sources there is no cure for this type of blindness.
“While we were at ACH Dr. Brodsky set up an appointment with the endocrinologist, Dr. Kemp, so he could check Kacie’s hormone levels,” Miranda said. “Her thyroid and cortisol levels were very low. He gave her some medicine that day. Kacie instantly became more alert and active like most babies her age. To this day, if Kacie has any stress on her body, like a broken bone or a fever over 101 degrees, we have to triple her dose of cortisol medicine. If Kacie gets very sick and cannot have her medicine she could die, because her body cannot fight off the sickness by itself.”
Miranda says they returned to ACH every three to four months to keep track of Kacie’s hormone level. Everything seemed to be fine until Kacie was 3- years old. “Then we noticed she had quit growing. She had worn the same size clothes for over a year,” Miranda said.
Kacie began receiving growth hormone shots, and is today growing and close to the size she should be for her age.
“Now that Kacie is older, we only need to go to ACH every six months,” Miranda said. “She is taking her medication, and is a healthy, growing 8- year-old girl – but, she is still blind.”
Kacie today
Today, Kacie is a third grade student at Nelson-Wilks-Herron Elementary School in Mountain Home. Although Kacie can see shadows and really bright objects, she cannot see anything clearly. This disadvantage has not kept her from learning. Her teacher, Cindy Childress, has nothing but praise for this brave little girl.
“Kacie is a sweet, hard working student,” Childress said. “Although she is visually impaired, Kacie works just as hard as the sighted students. She works independently using a Mountbatten Braille Machine to type answers, practice spelling words, work math problems and write stories or letters. Kacie has the same assignments as the other students. She is dedicated and determined to do things like her classmates.”
According to Childress, Kacie gets around the school using her cane. “Our school is quite large, and she is able to find her way to our classroom, the music room, library, computer lab, physical education room, art room, cafeteria and restroom,” Childress said.
The Mountain Home School District has a teacher for visually impaired students. She comes to Kacie’s class several times a week teaching her to use the Mountbatten Braille Machine and assisting her with class subject areas. She also brailles pages and assignments that are used in the classroom, according to Childress.
“The children love Kacie and are always eager to assist her if she needs help,” Childress said. “Kacie has a special place in my heart, and she is a joy to have in my classroom.”
Medical breakthrough
Although Kacie is learning to live with her blindness, her family continues to look for ways to improve Kacie’s life. This past summer a news report by Joy Robinson with Springfield, Mo., television KOLR 10, told the story of 6-year- old Missouri girl, Rylea, who was born with the same condition Kacie has. In July, Rylea was one of the first patients to participate in a new treatment using stem-cells taken from umbilical cords.
According to reports, Rylea and her mother traveled to Hangzhou, China, where Rylea received three spinal stem-cell transplants and two IV transplants. The results? Rylea’s eyes began to react to light; she has seen the faces of her mother, brother and sister; and was able to detect a big “E” on an eye chart across the room in the office of Dr. Larry Brothers, her Joplin, Mo., optometrist.
Kacie’s family is excited. This break-through research may be the first step in helping Kacie see the things a sighted person takes for granted.
According to the Web site for Stem Cells China and Beike Bio-Tech, “a baby’s umbilical cord, once considered medical waste, is a rich source of stem cells. Cells considered as the body’s ‘master cells.’ These are the basic building blocks of the human body, able to transform into blood, organs, tissue and components of the immune system. Stem cells reproduce and differentiate into many other cell types, including but not limited to: bone, heart, muscle and nerve. This is the miracle of cord blood.”
The treatment being offered by Stem Cells China is not available in the United States. According to its Web site the procedure takes harvested umbilical cord stem cells and transplants them into the patient. The objective is to “shock” the optic nerve with the enormous amount of stem cells, as well as additional neuron growth factor cells, which are supposed to guide the stem cells to the damaged nerve cells. This treatment is followed with treatment in a hyperbaric oxygen chamber. The results have so far, been promising.
Controversy in the United States exists with embryonic and fetal stem cells. To access these types of stem cells a fetus or embryo has to die bringing about the ethical issue of when a new life begins. The use of umbilical cord blood is largely uncontroversial. This is what is used in the stem-cell treatment in China.
The journey
The cost of the treatment may seem low when compared to medical costs in the United States, but is still expensive and not covered by insurance. The stem-cell treatment will cost Kacie’s family $30,000. Added to this will be the cost of airfare, food and housing for 30 days, passports, visas, shots and other incendentials. Family and friends are hoping to raise $50,000 to pay for the treatments and trip. If fundraising efforts go well, Kacie and her mother could be traveling to China this summer for the treatment.
Kacie’s grandmother, Diane Walker, has been employed by North Arkansas Electric Cooperative for several years. Diane and husband, Jerry, are residents of Gepp.
Kacie’s father, Stephen, was recently hired as a lineman for NAEC.
This past week, according to Kacie’s family, NAEC employees made a large donation to the family to help fund Kacie’s trip to China.
“Instead of Christmas gifts for each other, the employees of NAEC decided to donate the money they would have spent on gifts, to Kacie’s family,” said Jerry Estes with NAEC in Salem. “In addition, some made donations in amounts above the gift cost. NAEC employees wanted to help this family in their fundraising effort.”
An account in the name of Kacie Sallee has been established at First Security Bank in Mountain Home.
“When Kacie was born eight years ago, they told us there was nothing that could be done for her blindness. No hope of her ever seeing the things that we see and take for granted,” Kacie’s mother said. “Now there is hope, and it is in China. Please help us give this to Kacie. Kacie’s hope is Vision.”
Note from Stem Cell Girl;
The note that touched my soul here was the detication by all those at the company to help a child they knew not.
Reflecton: What is it in me that leads me to reach out and ask a mother to trust me? Let me take your child and cradle her in my arms, let me love and care for her, let me heal her and then allow me to return her to you so that she might see your smile.
I do not know if Justin ever saw my smile but I surely do know he felt my smile and knew my love.
Stem-cell treatment may give a young girl vision
12/26/07Erma Harris Managing Editor
Kacie Diane Sallee was welcomed into the world by her parents, Miranda and Stephen Sallee, on April 27, 1999. Although she had a problem during her first few days of life keeping her blood sugar level up, she was soon ready to go home with her proud parents.
“She had to stay in the hospital until she was a week old,” Miranda said. “But then, we got to take our healthy, happy baby home. She did get jaundice like most newborn babies but eventually got over it. Life was good.”
When Kacie was almost three months old a comment by a family member drew attention to a problem the young parents had not seen.
“I was talking to my Grandma Betty and Aunt Pat at church when they told me they didn’t think Kacie was using her eyes or acting like they thought she should be,” Miranda said. “I was so hurt. How dare they tell me something was wrong with my baby.”
Miranda made an appointment with Kacie’s pediatrician.
“When he asked me why we were there, I told him I was there to make my grandma happy,” Miranda said. “He told me Kacie would need to see an eye doctor.”
The eye doctor didn’t tell the Sallees what they thought they would hear – an affirmation that nothing was wrong with their baby girl. Instead the doctor said that something wasn’t right and sent them to Arkansas Children’s Hospital in Little Rock. The news they received was anything but comforting.
“We met with Dr. Brodsky at ACH,” Miranda said. “He told us that Kacie was blind and that she had something called Septo-Optic Dysplasia. When we found out that Kacie couldn’t see we were so hurt. I didn’t like to talk about it. I guess I pretended nothing was wrong. I asked myself, ‘Is this my fault? Did I do something wrong? Why did this happen to my baby?’ ”
A child with Septo-Optic Dysplasia (SOD) has under developed nerves from the eye to the brain. People with SOD may also have abnormalities of the brain and a poorly functioning pituitary gland. This condition is also known as Optic Nerve Hypoplasia and DeMorsier’s Syndrome. According to several medical sources there is no cure for this type of blindness.
“While we were at ACH Dr. Brodsky set up an appointment with the endocrinologist, Dr. Kemp, so he could check Kacie’s hormone levels,” Miranda said. “Her thyroid and cortisol levels were very low. He gave her some medicine that day. Kacie instantly became more alert and active like most babies her age. To this day, if Kacie has any stress on her body, like a broken bone or a fever over 101 degrees, we have to triple her dose of cortisol medicine. If Kacie gets very sick and cannot have her medicine she could die, because her body cannot fight off the sickness by itself.”
Miranda says they returned to ACH every three to four months to keep track of Kacie’s hormone level. Everything seemed to be fine until Kacie was 3- years old. “Then we noticed she had quit growing. She had worn the same size clothes for over a year,” Miranda said.
Kacie began receiving growth hormone shots, and is today growing and close to the size she should be for her age.
“Now that Kacie is older, we only need to go to ACH every six months,” Miranda said. “She is taking her medication, and is a healthy, growing 8- year-old girl – but, she is still blind.”
Kacie today
Today, Kacie is a third grade student at Nelson-Wilks-Herron Elementary School in Mountain Home. Although Kacie can see shadows and really bright objects, she cannot see anything clearly. This disadvantage has not kept her from learning. Her teacher, Cindy Childress, has nothing but praise for this brave little girl.
“Kacie is a sweet, hard working student,” Childress said. “Although she is visually impaired, Kacie works just as hard as the sighted students. She works independently using a Mountbatten Braille Machine to type answers, practice spelling words, work math problems and write stories or letters. Kacie has the same assignments as the other students. She is dedicated and determined to do things like her classmates.”
According to Childress, Kacie gets around the school using her cane. “Our school is quite large, and she is able to find her way to our classroom, the music room, library, computer lab, physical education room, art room, cafeteria and restroom,” Childress said.
The Mountain Home School District has a teacher for visually impaired students. She comes to Kacie’s class several times a week teaching her to use the Mountbatten Braille Machine and assisting her with class subject areas. She also brailles pages and assignments that are used in the classroom, according to Childress.
“The children love Kacie and are always eager to assist her if she needs help,” Childress said. “Kacie has a special place in my heart, and she is a joy to have in my classroom.”
Medical breakthrough
Although Kacie is learning to live with her blindness, her family continues to look for ways to improve Kacie’s life. This past summer a news report by Joy Robinson with Springfield, Mo., television KOLR 10, told the story of 6-year- old Missouri girl, Rylea, who was born with the same condition Kacie has. In July, Rylea was one of the first patients to participate in a new treatment using stem-cells taken from umbilical cords.
According to reports, Rylea and her mother traveled to Hangzhou, China, where Rylea received three spinal stem-cell transplants and two IV transplants. The results? Rylea’s eyes began to react to light; she has seen the faces of her mother, brother and sister; and was able to detect a big “E” on an eye chart across the room in the office of Dr. Larry Brothers, her Joplin, Mo., optometrist.
Kacie’s family is excited. This break-through research may be the first step in helping Kacie see the things a sighted person takes for granted.
According to the Web site for Stem Cells China and Beike Bio-Tech, “a baby’s umbilical cord, once considered medical waste, is a rich source of stem cells. Cells considered as the body’s ‘master cells.’ These are the basic building blocks of the human body, able to transform into blood, organs, tissue and components of the immune system. Stem cells reproduce and differentiate into many other cell types, including but not limited to: bone, heart, muscle and nerve. This is the miracle of cord blood.”
The treatment being offered by Stem Cells China is not available in the United States. According to its Web site the procedure takes harvested umbilical cord stem cells and transplants them into the patient. The objective is to “shock” the optic nerve with the enormous amount of stem cells, as well as additional neuron growth factor cells, which are supposed to guide the stem cells to the damaged nerve cells. This treatment is followed with treatment in a hyperbaric oxygen chamber. The results have so far, been promising.
Controversy in the United States exists with embryonic and fetal stem cells. To access these types of stem cells a fetus or embryo has to die bringing about the ethical issue of when a new life begins. The use of umbilical cord blood is largely uncontroversial. This is what is used in the stem-cell treatment in China.
The journey
The cost of the treatment may seem low when compared to medical costs in the United States, but is still expensive and not covered by insurance. The stem-cell treatment will cost Kacie’s family $30,000. Added to this will be the cost of airfare, food and housing for 30 days, passports, visas, shots and other incendentials. Family and friends are hoping to raise $50,000 to pay for the treatments and trip. If fundraising efforts go well, Kacie and her mother could be traveling to China this summer for the treatment.
Kacie’s grandmother, Diane Walker, has been employed by North Arkansas Electric Cooperative for several years. Diane and husband, Jerry, are residents of Gepp.
Kacie’s father, Stephen, was recently hired as a lineman for NAEC.
This past week, according to Kacie’s family, NAEC employees made a large donation to the family to help fund Kacie’s trip to China.
“Instead of Christmas gifts for each other, the employees of NAEC decided to donate the money they would have spent on gifts, to Kacie’s family,” said Jerry Estes with NAEC in Salem. “In addition, some made donations in amounts above the gift cost. NAEC employees wanted to help this family in their fundraising effort.”
An account in the name of Kacie Sallee has been established at First Security Bank in Mountain Home.
“When Kacie was born eight years ago, they told us there was nothing that could be done for her blindness. No hope of her ever seeing the things that we see and take for granted,” Kacie’s mother said. “Now there is hope, and it is in China. Please help us give this to Kacie. Kacie’s hope is Vision.”
Note from Stem Cell Girl;
The note that touched my soul here was the detication by all those at the company to help a child they knew not.
Reflecton: What is it in me that leads me to reach out and ask a mother to trust me? Let me take your child and cradle her in my arms, let me love and care for her, let me heal her and then allow me to return her to you so that she might see your smile.
I do not know if Justin ever saw my smile but I surely do know he felt my smile and knew my love.
Thursday, December 20, 2007
Blind girl hopes to receive stem cell treatment in ChinaJOANNE
December 20, 2007
BRATTON Bulletin Staff Writer
Sitting in her classroom, 8-year-old Kacie Sallee is like the rest of her classmates, laughing to Dr. Seuss' book, "How The Grinch Stole Christmas!"
When it's time for writing later that day, Kacie pulls out her Braille machine and keeps up with the rest of her third-grade class.
The Mountain Home girl was born with Septo-Optic Dysplasia, which is an underdevelopment of the optic nerve and pituitary gland, says her mother, Marinda Sallee. Although Kacie is blind and walks with a white cane, she can see light and some bright colors, Sallee says.
While the family has been told there is no cure for Kacie's condition, a new treatment using umbilical cord stem cells is being offered in China. With four reported success stories, it has given them hope their daughter could see for the first time.
"We were told from the beginning there was no hope for her seeing," Sallee said. "This is exciting. There's a risk of infection and spinal headaches, but it's a chance we're wanting to take."
Kacie and her mother plan to travel to China in June if they can raise the estimated $60,000 for medical treatments and travel. They hope to go with another Mountain Home resident, Josh Moore, 16, who also is blind. Moore and his mother, Melissa Kasinger, have just found out about the stem-cell treatments offered in China.
"It's overwhelming," Kasinger said. "We were told his whole life there was nothing we could do."
The procedure, which is not approved in the United States, involves injecting umbilical cord blood stem cells into the patient's bloodstream and spinal canal, according to information from Beike Biotech, a biotechnology company based in Shenzhen, China. The company supplies stem cells at 11 hospitals in China and one in Thailand for cellular therapy for a variety of diseases. The new cells replace diseased or dysfunctional cells with functional ones, according to the company.
After patients receive stem-cell treatment and return home, it is suggested they receive oxygen treatment for 1 1/2 hours a day, five days a week, for one year to help the stem cells progress, Sallee says.
So far, the four children with optic-nerve diseases who have received stem-cell treatment have reported progress, says Kirshner Ross-Vaden, a registered nurse and Chicago-based vice president of foreign patient relations for Beike Biotech. The first treatment began in June.
"No one in the world has attempted to treat it," said Ross-Vaden, adding that 25 children are scheduled to go to China for treatment within the first six months of next year. "It's really amazing. The fact that no one had any hope for their child and literally almost overnight parents who were told their children would never see, have — for the first time in their lives — a realistic option."
The Sallees first heard about the treatment in October from a Springfield, Mo., television broadcast about 5-year-old Rylea Barlett from Webb City, Mo.
Soon after receiving stem-cell treatments, Barlett, who was blind, was able to see light and recognize faces of her family up close, according to the family's online blog.
Although it's scary for Kacie to think of traveling across the globe to get treatment for her blindness, she wants to see. And if the treatments work, she hopes to take ballet classes, she says.
Mountain Home 11th-grader Josh Moore also is excited about the possibility of being able to see.
"It would be very good if it ends up working," Moore said. "I'm looking forward to it."
The Sallees hope to buy a hyperbaric oxygen chamber for the oxygen therapy and share its use with Moore, because it is cheaper buying the equipment than paying for individual treatments for one year, Marinda Sallee says.
To help raise funds for treatment for Kacie Sallee and Josh Moore, Mountain Home junior high students involved in Student Ambassadors For Everyone (SAFE) are sponsoring a student dodge ball tournament Friday.
Students can pay to watch or participate in the tournament, as well as pay money to wear a hat, have their MP-3 player or cell phone on them during the school day, School Resource Officer Tom Canta says. Students who watch or are in the tournament also will be entered in a drawing to win $20-$50 in gift cards donated by Wal-Mart.
Those in the community who want to donate money to help with treatment costs for both students can mail or drop off checks at the junior high school until the end of the school year, Canta says. The money received will be evenly divided between Sallee and Moore.
"If we can help someone get to see, we'll do it," Canta said. "To me, to have a little girl see again — who doesn't want to help that?"
Bulletin Photo by Kevin Pieper
Using a Braille machine, Kacie Sallee, 8, reads through an English paper while Nelson-Wilks-Herron Elementary School third-grade teacher Cindy Childress watches.
Want to help?
· A benefit account for 8-year-old Kacie Sallee is set up at First Security Bank. Donations will be used for medical treatment and travel costs.
· A fundraiser to help pay for medical treatment and travel costs for Sallee and 16-year-old Josh Moore has begun at the Mountain Home Junior High School. Those who want to donate can write checks made out to Mountain Home Junior High School and drop them off at the office, or mail them to the junior high school C/O School Resource Officer Tom Canta, 2301 Rodeo Drive, Mountain Home, AR 72653. Those with questions about the fundraiser can call the junior high office at 425-1231.
Bulletin Photo by Kevin Pieper
Third-grade student Lauren Wilber, 9, helps Kacie Sallee, 8, with a project Tuesday during class at Nelson-Wilks-Herron Elementary School. Sallee and her family hope to travel to China this summer for a new treatment using umbilical cord stem cells that could help restore her sight.
BRATTON Bulletin Staff Writer
Sitting in her classroom, 8-year-old Kacie Sallee is like the rest of her classmates, laughing to Dr. Seuss' book, "How The Grinch Stole Christmas!"
When it's time for writing later that day, Kacie pulls out her Braille machine and keeps up with the rest of her third-grade class.
The Mountain Home girl was born with Septo-Optic Dysplasia, which is an underdevelopment of the optic nerve and pituitary gland, says her mother, Marinda Sallee. Although Kacie is blind and walks with a white cane, she can see light and some bright colors, Sallee says.
While the family has been told there is no cure for Kacie's condition, a new treatment using umbilical cord stem cells is being offered in China. With four reported success stories, it has given them hope their daughter could see for the first time.
"We were told from the beginning there was no hope for her seeing," Sallee said. "This is exciting. There's a risk of infection and spinal headaches, but it's a chance we're wanting to take."
Kacie and her mother plan to travel to China in June if they can raise the estimated $60,000 for medical treatments and travel. They hope to go with another Mountain Home resident, Josh Moore, 16, who also is blind. Moore and his mother, Melissa Kasinger, have just found out about the stem-cell treatments offered in China.
"It's overwhelming," Kasinger said. "We were told his whole life there was nothing we could do."
The procedure, which is not approved in the United States, involves injecting umbilical cord blood stem cells into the patient's bloodstream and spinal canal, according to information from Beike Biotech, a biotechnology company based in Shenzhen, China. The company supplies stem cells at 11 hospitals in China and one in Thailand for cellular therapy for a variety of diseases. The new cells replace diseased or dysfunctional cells with functional ones, according to the company.
After patients receive stem-cell treatment and return home, it is suggested they receive oxygen treatment for 1 1/2 hours a day, five days a week, for one year to help the stem cells progress, Sallee says.
So far, the four children with optic-nerve diseases who have received stem-cell treatment have reported progress, says Kirshner Ross-Vaden, a registered nurse and Chicago-based vice president of foreign patient relations for Beike Biotech. The first treatment began in June.
"No one in the world has attempted to treat it," said Ross-Vaden, adding that 25 children are scheduled to go to China for treatment within the first six months of next year. "It's really amazing. The fact that no one had any hope for their child and literally almost overnight parents who were told their children would never see, have — for the first time in their lives — a realistic option."
The Sallees first heard about the treatment in October from a Springfield, Mo., television broadcast about 5-year-old Rylea Barlett from Webb City, Mo.
Soon after receiving stem-cell treatments, Barlett, who was blind, was able to see light and recognize faces of her family up close, according to the family's online blog.
Although it's scary for Kacie to think of traveling across the globe to get treatment for her blindness, she wants to see. And if the treatments work, she hopes to take ballet classes, she says.
Mountain Home 11th-grader Josh Moore also is excited about the possibility of being able to see.
"It would be very good if it ends up working," Moore said. "I'm looking forward to it."
The Sallees hope to buy a hyperbaric oxygen chamber for the oxygen therapy and share its use with Moore, because it is cheaper buying the equipment than paying for individual treatments for one year, Marinda Sallee says.
To help raise funds for treatment for Kacie Sallee and Josh Moore, Mountain Home junior high students involved in Student Ambassadors For Everyone (SAFE) are sponsoring a student dodge ball tournament Friday.
Students can pay to watch or participate in the tournament, as well as pay money to wear a hat, have their MP-3 player or cell phone on them during the school day, School Resource Officer Tom Canta says. Students who watch or are in the tournament also will be entered in a drawing to win $20-$50 in gift cards donated by Wal-Mart.
Those in the community who want to donate money to help with treatment costs for both students can mail or drop off checks at the junior high school until the end of the school year, Canta says. The money received will be evenly divided between Sallee and Moore.
"If we can help someone get to see, we'll do it," Canta said. "To me, to have a little girl see again — who doesn't want to help that?"
Bulletin Photo by Kevin Pieper
Using a Braille machine, Kacie Sallee, 8, reads through an English paper while Nelson-Wilks-Herron Elementary School third-grade teacher Cindy Childress watches.
Want to help?
· A benefit account for 8-year-old Kacie Sallee is set up at First Security Bank. Donations will be used for medical treatment and travel costs.
· A fundraiser to help pay for medical treatment and travel costs for Sallee and 16-year-old Josh Moore has begun at the Mountain Home Junior High School. Those who want to donate can write checks made out to Mountain Home Junior High School and drop them off at the office, or mail them to the junior high school C/O School Resource Officer Tom Canta, 2301 Rodeo Drive, Mountain Home, AR 72653. Those with questions about the fundraiser can call the junior high office at 425-1231.
Bulletin Photo by Kevin Pieper
Third-grade student Lauren Wilber, 9, helps Kacie Sallee, 8, with a project Tuesday during class at Nelson-Wilks-Herron Elementary School. Sallee and her family hope to travel to China this summer for a new treatment using umbilical cord stem cells that could help restore her sight.
Thursday, November 1, 2007
Therapy offers Ray of Hope for Evans City Girl
November 1, 2007
Therapy Offers Ray of Hope for Evans City Girl
By Karen Roebuck Lexi Smith says she likes being blind. Even so, the 8-year-old Evans City girl says she really wants to see her cat, Jesse, more than anything. She hopes an experimental stem cell transplant in China next summer will give her that chance. "Even if it wasn't experimental, I'd be nervous about going to a foreign country and getting a treatment," said Lexi's mother, Heather, 30, who is trying to raise $50,000 for the treatments and trip. "I can't see myself not trying this. I think we'd be forever asking ourselves, 'What if we had tried this?' " Although umbilical stem cells are used in this country to treat more than 50 diseases, they are not used to treat Lexi's condition, optic nerve hypoplasia, an underdevelopment of optic nerves. Several months ago, Beike Biotechnology, based in Shenzhen, China, began treating children with the condition with stem cell transplants, and intravenous infusions of blood cord serum and a chemical that stimulates nerve growth. The company recommends hyperbaric oxygen treatments for three months after patients return home. A 10-month-old Kentucky boy is in China now, the fourth optic nerve hypoplasia patient to receive the treatment. Some American experts, however, express doubts about the therapy. The treatments likely will not work but should not be dangerous, said Albert Donnenberg, director of UPMC's Hematopoietic Stem Cell Laboratory and professor of medicine at the University of Pittsburgh School of Medicine. Donnenberg, who read the company's literature, sees three obstacles: The stem cells must get to the right place in the body, turn into the right type of cells and not be rejected by the immune system, he said. "They're giving such few cells, you wouldn't know (if they were rejected)," Donnenberg said. Dr. Richard Hertle, chief of pediatric ophthalmology at Children's Hospital of Pittsburgh, said he has seen nothing about Beike's work in medical journals. "I've looked at this, and I just don't see enough evidence to send my patients over there," said Hertle, who has taught and worked in China. "If this was really that spectacular, this would have gotten pushed through and been the lead article in the New England Journal of Medicine or the journal Nature." Hertle said the younger a child receives treatment, the better it tends to work. Treatments in the United States help blind children with optic nerve hypoplasia and other conditions gain some vision, although not by restoring the nerve, as Beike is claiming to do, he said. Lexi, who has limited light perception, turns 9 on Nov. 25. "I think, at this point, (Lexi) has an excellent chance of some vision recovery, given what we've seen with the other four children, although there are no guarantees," said Kirshner Ross-Vaden, Beike's Chicago-based vice president of foreign patient relations. Lexi is in the gifted program at Evans City Elementary School, part of the Seneca Valley School District. An aide translates her assignments to and from Braille. At 1 month old, she was diagnosed with the absence of the septum pellucidum, a thin membrane in the middle of the brain often linked to hormonal problems, which Lexi has not had, and optic nerve hypoplasia. "I was always told there was nothing that could be done," Smith said. She scoured the Internet in vain until Lexi's dad, Jeff Moraski, saw a news report about a blind man being treated with stem cells. Smith eventually found the story of Rylea Barlett, 5, of Webb City, Mo., who has optic nerve hypoplasia. After reading on Beike's Web site about its success treating brain injuries and other neurological conditions, Rylea's mother, Dawn Barlett, 30, e-mailed the company and asked if it would be willing to try the procedure on her daughter. Rylea, who had no light perception, began treatments July 4. She can distinguish shapes and some details, such as whether her mother is wearing glasses or lipstick, up to six feet away and has 2-400 vision, according to her mother. "Within two months, she grew 1 1/2 inches, where she hadn't grown in two years," her mother said. Beike formed two years ago to treat patients with neurological conditions with umbilical stem cell transplants and the company recruits American and foreign patients. The transplants are done at 11 facilities in China, two of which accept foreign patients, Ross-Vaden said. As of October 2006, Beike said it performed stem cell transplants on more than 2,000 patients with neurological problems, including Alzheimer's disease, brain injury, cerebral palsy and multiple sclerosis. "Stem cells are not a cure, and I think that has to be stressed. These cells are a treatment for a lot of disorders," Ross-Vaden said, "but they're not going to completely resolve or reverse something." When Smith read Rylea's story about three weeks ago, she said, "I just sat at the computer and I bawled. I was shaking, crying. There was hope." Her family immediately started raising money to take Lexi to China in June. "I think it will be exciting -- getting the treatment and being in the (hyperbaric) oxygen tent," Lexi said. "I'm excited about that, because I like tents, and it's like a tent." And she longs to see her cat, Jesse. "I'm a cat lover," Lexi said. "I have to see what cats look like."
Therapy Offers Ray of Hope for Evans City Girl
By Karen Roebuck Lexi Smith says she likes being blind. Even so, the 8-year-old Evans City girl says she really wants to see her cat, Jesse, more than anything. She hopes an experimental stem cell transplant in China next summer will give her that chance. "Even if it wasn't experimental, I'd be nervous about going to a foreign country and getting a treatment," said Lexi's mother, Heather, 30, who is trying to raise $50,000 for the treatments and trip. "I can't see myself not trying this. I think we'd be forever asking ourselves, 'What if we had tried this?' " Although umbilical stem cells are used in this country to treat more than 50 diseases, they are not used to treat Lexi's condition, optic nerve hypoplasia, an underdevelopment of optic nerves. Several months ago, Beike Biotechnology, based in Shenzhen, China, began treating children with the condition with stem cell transplants, and intravenous infusions of blood cord serum and a chemical that stimulates nerve growth. The company recommends hyperbaric oxygen treatments for three months after patients return home. A 10-month-old Kentucky boy is in China now, the fourth optic nerve hypoplasia patient to receive the treatment. Some American experts, however, express doubts about the therapy. The treatments likely will not work but should not be dangerous, said Albert Donnenberg, director of UPMC's Hematopoietic Stem Cell Laboratory and professor of medicine at the University of Pittsburgh School of Medicine. Donnenberg, who read the company's literature, sees three obstacles: The stem cells must get to the right place in the body, turn into the right type of cells and not be rejected by the immune system, he said. "They're giving such few cells, you wouldn't know (if they were rejected)," Donnenberg said. Dr. Richard Hertle, chief of pediatric ophthalmology at Children's Hospital of Pittsburgh, said he has seen nothing about Beike's work in medical journals. "I've looked at this, and I just don't see enough evidence to send my patients over there," said Hertle, who has taught and worked in China. "If this was really that spectacular, this would have gotten pushed through and been the lead article in the New England Journal of Medicine or the journal Nature." Hertle said the younger a child receives treatment, the better it tends to work. Treatments in the United States help blind children with optic nerve hypoplasia and other conditions gain some vision, although not by restoring the nerve, as Beike is claiming to do, he said. Lexi, who has limited light perception, turns 9 on Nov. 25. "I think, at this point, (Lexi) has an excellent chance of some vision recovery, given what we've seen with the other four children, although there are no guarantees," said Kirshner Ross-Vaden, Beike's Chicago-based vice president of foreign patient relations. Lexi is in the gifted program at Evans City Elementary School, part of the Seneca Valley School District. An aide translates her assignments to and from Braille. At 1 month old, she was diagnosed with the absence of the septum pellucidum, a thin membrane in the middle of the brain often linked to hormonal problems, which Lexi has not had, and optic nerve hypoplasia. "I was always told there was nothing that could be done," Smith said. She scoured the Internet in vain until Lexi's dad, Jeff Moraski, saw a news report about a blind man being treated with stem cells. Smith eventually found the story of Rylea Barlett, 5, of Webb City, Mo., who has optic nerve hypoplasia. After reading on Beike's Web site about its success treating brain injuries and other neurological conditions, Rylea's mother, Dawn Barlett, 30, e-mailed the company and asked if it would be willing to try the procedure on her daughter. Rylea, who had no light perception, began treatments July 4. She can distinguish shapes and some details, such as whether her mother is wearing glasses or lipstick, up to six feet away and has 2-400 vision, according to her mother. "Within two months, she grew 1 1/2 inches, where she hadn't grown in two years," her mother said. Beike formed two years ago to treat patients with neurological conditions with umbilical stem cell transplants and the company recruits American and foreign patients. The transplants are done at 11 facilities in China, two of which accept foreign patients, Ross-Vaden said. As of October 2006, Beike said it performed stem cell transplants on more than 2,000 patients with neurological problems, including Alzheimer's disease, brain injury, cerebral palsy and multiple sclerosis. "Stem cells are not a cure, and I think that has to be stressed. These cells are a treatment for a lot of disorders," Ross-Vaden said, "but they're not going to completely resolve or reverse something." When Smith read Rylea's story about three weeks ago, she said, "I just sat at the computer and I bawled. I was shaking, crying. There was hope." Her family immediately started raising money to take Lexi to China in June. "I think it will be exciting -- getting the treatment and being in the (hyperbaric) oxygen tent," Lexi said. "I'm excited about that, because I like tents, and it's like a tent." And she longs to see her cat, Jesse. "I'm a cat lover," Lexi said. "I have to see what cats look like."
Sunday, October 28, 2007
Fight For Sight: Family in Hopes of a Medical Miracle
October 28, 2007
Fight for Sight: Family in Hopes of a Medical Miracle
Standard DemocratEAST PRAIRIE — Every night before she falls asleep, Paige Archie dreams about the time her son will see her for the first time.“I wonder what he’ll do when he sees me,” she said. “The thought goes through my head all the time.”Her son Daegan, 4, was born blind. Eye doctors say his optic nerves didn’t fully develop. “They don’t know what causes it,” Archie said.Archie said she had a normal pregnancy, although she had some difficulty with labor. Daegan weighed 8 pounds, 13 ounces when he was born and was “just as normal as could be.”But once he was about 3 months old, family members began to notice things they thought were odd. “He wouldn’t reach for a rattle, he didn’t care for looking at anybody,” Archie said. And his eyes would “jump back and forth.” It was her grandfather, Richard Sutton, who finally convinced the Archies to take Daegan to the doctor. “I kept watching and he didn’t have the movement,” Sutton said. “He wouldn’t follow you around or anything.”Doctors told the Archies the only way to make Daegan see is to transplant or regenerate nerves — something they weren’t able to do.But now the Archies have hope. A couple of months ago, Paige Archie saw a newspaper article about a 6-year-old from Webb City who was also born blind. However, the girl had developed 20/400 vision after receiving an umbilical “corded-blood” stem-cell treatment in China.“I thought ‘that’s hope for Daegan right there,’” Archie said.Soon after she saw the article, Archie found a Web site and contact information from the other family and spoke with that girl’s mother.“I was so excited when I got off the phone,” Archie said. “It didn’t feel real.” They talked to Daegan’s doctors, who called him “a perfect candidate” for the injections. The only problem is that the process is expensive — and it isn’t covered by insurance, since it is considered research.Between the cost of the injections, travel, expenses the family will incur the 30 days they are in China and the therapy Daegan will require once he returns home, the total tab will be about $60,000.So now, with help from the community, the family is working to raise that money. Archie hopes to leave for China near the beginning of June.“Everybody’s been pulling for this child,” said Loretta Peters, Daegan’s great- grandmother. There have been yard sales, T-shirt sales and road blocks, and about $5,800 has been raised in just three weeks. Organizations are planning other events, such as a fish fry, and a golf tournament is in the works for next spring.Richard and Judy Sutton, Daegan's great-grandparents, said they’ve been overwhelmed by the response.“It’s a surprise that in that length of time we’ve been able to raise that much,” Judy Sutton said.Richard Sutton said he has had several friends say they plan to donate when they see just how much is needed. “It would mean the world to me if he could just see enough to just walk around,” he said.People are being proactive with the cause. “We’ve even had businesses call and say ‘bring a jar’ for donations,” Peters said.Even Daegan’s brother Jase, 3, has a jar — dubbed his “China Money” — where he collects coins. “We didn’t want him to feel left out,” Archie said. And for those who can’t donate, support and prayers are just as appreciated. “You don’t have to donate a dollar,” Archie said. “We need prayers, too.”She was afraid the town may not be supportive since stem cells can be a sensitive issue. But, Archie said, she hasn’t faced any criticism.She and other family members have made it clear the injections don’t deal with aborted fetuses, but umbilical cords — in fact, Jase’s umbilical cord was banked in case it can be used. They also give out the Web site, www.stemcellschina.com, so people can research it themselves.“We’re just looking forward to the day we can send him to China,” said his grandmother, June Maxey.No one knows what the injections will mean for Daegan. “They don’t like to give odds,” Archie said.But she’s hoping for something, no matter how small. “It might not be perfect, but if he could see my face, that’s all that matters,” Archie said. “If this can give him a chance, we need to give him that chance,” Peters agreed.Even so, the family is making plans to help better Daegan’s future if the injections don’t give enough improvement.“We’re planning to move to St. Louis so he can go to the Missouri School for the Blind,” Archie said.While it will provide Daegan with an education, he’ll also learn important life skills. “They’ll teach him how to be independent, too,” she said.But family members hope the injections give Daegan enough vision he doesn’t have to go there, and perhaps be home schooled instead.“In the back of our minds, we hope for more, like for him to go to regular school,” Maxey said. “We’re all really close and we don’t want to see him move away.”
Fight for Sight: Family in Hopes of a Medical Miracle
Standard DemocratEAST PRAIRIE — Every night before she falls asleep, Paige Archie dreams about the time her son will see her for the first time.“I wonder what he’ll do when he sees me,” she said. “The thought goes through my head all the time.”Her son Daegan, 4, was born blind. Eye doctors say his optic nerves didn’t fully develop. “They don’t know what causes it,” Archie said.Archie said she had a normal pregnancy, although she had some difficulty with labor. Daegan weighed 8 pounds, 13 ounces when he was born and was “just as normal as could be.”But once he was about 3 months old, family members began to notice things they thought were odd. “He wouldn’t reach for a rattle, he didn’t care for looking at anybody,” Archie said. And his eyes would “jump back and forth.” It was her grandfather, Richard Sutton, who finally convinced the Archies to take Daegan to the doctor. “I kept watching and he didn’t have the movement,” Sutton said. “He wouldn’t follow you around or anything.”Doctors told the Archies the only way to make Daegan see is to transplant or regenerate nerves — something they weren’t able to do.But now the Archies have hope. A couple of months ago, Paige Archie saw a newspaper article about a 6-year-old from Webb City who was also born blind. However, the girl had developed 20/400 vision after receiving an umbilical “corded-blood” stem-cell treatment in China.“I thought ‘that’s hope for Daegan right there,’” Archie said.Soon after she saw the article, Archie found a Web site and contact information from the other family and spoke with that girl’s mother.“I was so excited when I got off the phone,” Archie said. “It didn’t feel real.” They talked to Daegan’s doctors, who called him “a perfect candidate” for the injections. The only problem is that the process is expensive — and it isn’t covered by insurance, since it is considered research.Between the cost of the injections, travel, expenses the family will incur the 30 days they are in China and the therapy Daegan will require once he returns home, the total tab will be about $60,000.So now, with help from the community, the family is working to raise that money. Archie hopes to leave for China near the beginning of June.“Everybody’s been pulling for this child,” said Loretta Peters, Daegan’s great- grandmother. There have been yard sales, T-shirt sales and road blocks, and about $5,800 has been raised in just three weeks. Organizations are planning other events, such as a fish fry, and a golf tournament is in the works for next spring.Richard and Judy Sutton, Daegan's great-grandparents, said they’ve been overwhelmed by the response.“It’s a surprise that in that length of time we’ve been able to raise that much,” Judy Sutton said.Richard Sutton said he has had several friends say they plan to donate when they see just how much is needed. “It would mean the world to me if he could just see enough to just walk around,” he said.People are being proactive with the cause. “We’ve even had businesses call and say ‘bring a jar’ for donations,” Peters said.Even Daegan’s brother Jase, 3, has a jar — dubbed his “China Money” — where he collects coins. “We didn’t want him to feel left out,” Archie said. And for those who can’t donate, support and prayers are just as appreciated. “You don’t have to donate a dollar,” Archie said. “We need prayers, too.”She was afraid the town may not be supportive since stem cells can be a sensitive issue. But, Archie said, she hasn’t faced any criticism.She and other family members have made it clear the injections don’t deal with aborted fetuses, but umbilical cords — in fact, Jase’s umbilical cord was banked in case it can be used. They also give out the Web site, www.stemcellschina.com, so people can research it themselves.“We’re just looking forward to the day we can send him to China,” said his grandmother, June Maxey.No one knows what the injections will mean for Daegan. “They don’t like to give odds,” Archie said.But she’s hoping for something, no matter how small. “It might not be perfect, but if he could see my face, that’s all that matters,” Archie said. “If this can give him a chance, we need to give him that chance,” Peters agreed.Even so, the family is making plans to help better Daegan’s future if the injections don’t give enough improvement.“We’re planning to move to St. Louis so he can go to the Missouri School for the Blind,” Archie said.While it will provide Daegan with an education, he’ll also learn important life skills. “They’ll teach him how to be independent, too,” she said.But family members hope the injections give Daegan enough vision he doesn’t have to go there, and perhaps be home schooled instead.“In the back of our minds, we hope for more, like for him to go to regular school,” Maxey said. “We’re all really close and we don’t want to see him move away.”
Friday, October 26, 2007
Benifit to Help Toddler's Recovery
October 26, 2007
Benefit to Help Fund Toddler's Recovery
Sun-herald.comPORT CHARLOTTE -- Cameron Petersen's sight continues to improve, but his family still needs help.The Loyal Order Moose Lodge 2121 and Fraternal Order of Eagles will hold a charity fundraiser Saturday to benefit Cameron. The event will take place from 11 a.m. to 2 p.m. at the Moose Lodge on Loveland Boulevard.The 21-month-old Port Charlotte toddler suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done.The family began to research other options and found Stem Cells China, a research facility that has infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China in August as part of a case study to treat his blindness with stem cells. The procedure transplanted harvested umbilical-cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- tasks he couldn't do before. Now, doctors say he can see to his knees.The family needs assistance with medical expenses, including a hyperbaric oxygen decompression unit to help Cameron's vision improve.Cameron's grandmother, Carol Petersen, will also hold an event at Gilchrist Park Nov. 3 to raise awareness about umbilical stem-cell research. Petersen has been collecting signatures since September to start a government-funded cord blood bank.For more information about Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America.
Benefit to Help Fund Toddler's Recovery
Sun-herald.comPORT CHARLOTTE -- Cameron Petersen's sight continues to improve, but his family still needs help.The Loyal Order Moose Lodge 2121 and Fraternal Order of Eagles will hold a charity fundraiser Saturday to benefit Cameron. The event will take place from 11 a.m. to 2 p.m. at the Moose Lodge on Loveland Boulevard.The 21-month-old Port Charlotte toddler suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done.The family began to research other options and found Stem Cells China, a research facility that has infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China in August as part of a case study to treat his blindness with stem cells. The procedure transplanted harvested umbilical-cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- tasks he couldn't do before. Now, doctors say he can see to his knees.The family needs assistance with medical expenses, including a hyperbaric oxygen decompression unit to help Cameron's vision improve.Cameron's grandmother, Carol Petersen, will also hold an event at Gilchrist Park Nov. 3 to raise awareness about umbilical stem-cell research. Petersen has been collecting signatures since September to start a government-funded cord blood bank.For more information about Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America.
Friday, September 28, 2007
No More Darkness
Sun-herald.comBy Jason WitzStem-cell treatments already producing changes in Port Charlotte toddler, who is legally blindCameron Petersen can't sit still.The 19-month-old Port Charlotte toddler crawls toward objects with a new sense of curiosity. His legal blindness seems to be fading with each day in China, as he explores the foreign surroundings of the room."My son says he's like a little monkey," said Cameron's grandmother, Carol Petersen, who has been communicating with the family by phone.Earlier this month, Cameron traveled to China with his parents, Melissa VanGorp and Zachery Petersen, as part of a case study to treat his blindness with stem cells.Cameron was diagnosed with optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness. Doctors told Cameron's parents nothing could be done.But the family never gave up hope.They found Stem Cells China, a research facility which has successfully infused stem cells into patients suffering from numerous disabilities and diseases.Family members raised about $20,000 this summer to help fund the trip to China and for the treatment.The procedure, which isn't available in America, transplanted harvested umbilical cord stem cells into Cameron.Stem cells can transform into specialized cells with specific functions, such as repair of Cameron's optic nerves.Treatment consisted of four total stem-cell infusions to Cameron's arm and the lumbar region of his spine. It didn't take long to notice a change.Carol Petersen said Cameron's energy level increased following his first treatment on Aug. 10. He also seemed healthier.Petersen said Cameron used to have a high temperature every other day.By the third treatment, Cameron was standing on his own and crawling toward objects -- something he couldn't do before. In the past, Cameron would feel objects such as his toys by putting them against his lips and face."He's exploring everything," Petersen said. "I am just so overjoyed."Cameron is one of five children to undergo stem-cell treatment for optic nerve hypoplasia. Among those treated by Stem Cells China was a child from Missouri this summer, along with a girl from Romania. Both have shown incredible progress with vision.Cameron will return early Wednesday morning with his parents.Peterson said she hopes to raise awareness about stem-cell research, since it remains a controversial subject in the United States."If it's in our power to do this to help people, why can't we?" she said.
Braille Institute VP: Cameron May be a Door Opener for the Future
Sun-herald.comBy Dawn KrebsThe news of an 18-month-old boy slowly regaining his eyesight has rippled across Southwest Florida."That makes four children that we know of that have received this treatment who can see now," stated Chuck Johnson, vice president of The Braille Institute of Florida. The institute works in Southwest Florida to increase Braille literacy and encourage children with blindness and other learning disabilities to express their talents. "If Cameron is coming through that same exchange, he may be a door opener for the future."The legally blind Port Charlotte toddler was diagnosed with optic nerve hypoplasia, or a lack of development of the optic nerve, and traveled to China for stem-cell treatment the beginning of August."Hypoplasia comes from damage to the optic nerve," Johnson said. "It's not strong enough to carry the light. The only thing that can help your sight is to undergo this type of treatment. His optic nerve was asleep; now it's getting a new shock. This new shock is the stem cells that are from the umbilical cord."According to Eric Stockley, of the Charlotte County Health Department, Cameron received a series of five injections of umbilical cord stem cells directly through his spine into the fluid that surrounds the brain. These are cells harvested from umbilical cord blood and not the embryonic cells that are at the center of controversy right now.Each injection delivers more than 10 million stem cells in combination with additional neuron growth factor cells. These cells guide the stem cells to the damaged nerve cells, which in Cameron's case is the optic nerve. Once the stem cells have located the damaged nerve they begin to rejuvenate and replace and repair the damage.After he returns to the United States, Cameron will continue to take treatments for another year or more. Also, he will have to undergo three months of intensive therapy to stimulate his sight. Also, for 12 months, Cameron must spend some time every day, five days a week, in a hyperbaric oxygen decompression unit. This is similar to what divers with the bends must undergo, but for Cameron, this therapy will encourage armature stem-cell growth.What will this small success mean for future research?"He (Cameron) is coming from scratch," Johnson said. "If he's getting stronger, it's because of these treatments. It's exciting news for us. We have a winning key on our hands, and the government is going to hear about it."
Tuesday, September 25, 2007
Helping Other Children See
Sun-heraldBy Jason Witz Grandmother of Cameron Petersen wants to get government-funded umbilical cord blood bank to serve community Carol Petersen wants to help other children see.But it's going to take a lot of legwork and signatures.The Port Charlotte resident hopes to raise awareness about umbilical cord stem-cell research using her grandson's story of sight.Cameron Petersen, a 20-month toddler who is legally blind, has made significant progress since undergoing a stem-cell infusion in China last month.Now, the goal is to secure government funding to open a public umbilical cord blood bank in Charlotte County, providing other children with hope. The petition has already received hundreds of signatures."I'm trying to help all the other Cameron Petersens," his grandmother said.Cameron suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done. The family began to research other options and found Stem Cells China, a research facility which has successfully infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China with his parents, Melissa VanGorp and Zachery Petersen, last month as part of a case study to treat his blindness with stem cells. These cells can develop into specialized cells and even repair tissue. The procedure, which isn't available in the United States, transplanted harvested umbilical cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- something he couldn't do before. Now, doctors say he can see about 1 1/2 feet, or to his knees.Since the treatment, Petersen said many families have contacted her about getting their children help.Petersen said the United States has several cord blood bank facilities, but most are privately operated and expensive."People shouldn't have to go to China for treatment," she said.The public, medical community and state and local government agencies are invited to learn about umbilical stem-cell research Nov. 3 at Gilchrist Park.The event will feature the success stories of Cameron and a girl from Missouri who can now see. Kirshner Ross-Vaden, one of the leading experts on umbilical stem-cell treatments, will discuss their stories.Petersen said she hopes to raise awareness about the petition to start a government-funded cord blood bank."If enough people want it in Charlotte County, we will make it happen," she said. "I'm not going to stop until I get it."For more information on Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America. The money will help fund a hyperbaric oxygen chamber needed for Cameron's continued recovery.
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