Colin LindenmayerApril 26, 2008Even though she can't see the field, Macie Morse attends every Colorado Ice home game.Macie, a 15-year-old ninth grader at Wellington Junior High School, has optic nerve hypoplasia. Ice kicker Deric Yaussi has developed a fundraiser to pay for a procedure to hopefully cure the blindness-causing syndrome.The fundraiser, dubbed "Kickin' It For Macie," has its own announcement during halftime of United Indoor Football League games at the Budweiser Events Center in Loveland. People are encouraged to donate any amount of money per point Yaussi scores this season. In addition, buckets are passed through the arena during the game to collect donations from the crowd."I've heard about other fundraisers throughout the league and I thought it was my turn," Yaussi said.At the Ice's home opener on April 10, fans donated over $1,000. Money collected from the Ice's April 18 game combined with other donation sources for Macie total about $11,000."We're getting donations from people all over that we don't even know and never heard of just because they know that Deric is doing this," Macie's mom, Rochelle Morse, said.Yaussi said he hopes to raise all the money for the procedure -- which costs about $30,000 and isn't offered in the U.S. -- but if the funds fall short, he's glad he gave the family a head start."The goal right now is just to raise as much as possible," Yaussi said. "(Macie's) family is very appreciative for what I'm doing."Optic nerve hypoplasia is one of the leading causes of blindness in children. The disorder causes fibers in the eyes' nerves to stop growing. The procedure the Morses have decided on, which is only offered in China, gives the patient cord blood stemcell injections. The blood comes from donated umbilical cords.Though Macie's operation would be considered a case study, the injections have been performed on 10 children, all of which experienced improvements in their vision. Macie has no vision in one eye and very poor vision in the other.When Yaussi informed the Morses he had decided to help raise money for the injection, the family flooded with emotion."Macie started crying. Her mom got real emotional," Yaussi said.Said Rochelle: "I don't even have words for it. People just don't do that nowadays."Yaussi met the Morses through his mom, Carol Yaussi, who works with Rochelle at Poudre High School. When the two became friends and introduced their families to each other, Yaussi found out about Macie's condition.He said he created the fund because he had the ability to help a family friend in need.The fundraiser isn't distracting Yaussi from his kicking. Heading into tonight's road game against the Omaha Beef, he ranks first among United Indoor Football League kickers in scoring with 56 points, first in field goals per game with 1.83, and first in point-after-touchdown percentage at 92 percent (23-for-25).
http://www.greeleytrib.com/article/20080426/SPORTS/824980934
Saturday, April 26, 2008
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
Friday, April 11, 2008
Yaussi kicks it for Macie
Yaussi kicks it for Macie in home openerBY HAP FRY HapFry@coloradoan.com
LOVELAND - Macie Morse is trying to see, and Deric Yaussi is putting his best foot forward to ensure that she does.
The Colorado Ice kicker booted two field goals and added two extra points in the Ice's home-opener Thursday night against the Billings Outlaws.
Yaussi hopes to help raise aproximately $40,000 for Morse, who suffers from optic nerve hypoplasia (ONH) and is nearly blind.
That money would be used to send Morse to China where she would receive a stem-cell injection that has been successful in treating people with ONH.
Morse and Yaussi filmed a segment, which was shown at halftime, together urging people to donate money and or sponsor him by making a financial pledge for every point he scores this season.
A silent Bud Center crowd then saw a video of what Morse's every day experiences are like.
"I pretty much cried all the way through it," said Rochelle Morse, Macie's mother. "It's just unbelievable that this is all happening. Just the generosity of all the fans, the Ice and Deric Yaussi has been incredible."
LOVELAND - Macie Morse is trying to see, and Deric Yaussi is putting his best foot forward to ensure that she does.
The Colorado Ice kicker booted two field goals and added two extra points in the Ice's home-opener Thursday night against the Billings Outlaws.
Yaussi hopes to help raise aproximately $40,000 for Morse, who suffers from optic nerve hypoplasia (ONH) and is nearly blind.
That money would be used to send Morse to China where she would receive a stem-cell injection that has been successful in treating people with ONH.
Morse and Yaussi filmed a segment, which was shown at halftime, together urging people to donate money and or sponsor him by making a financial pledge for every point he scores this season.
A silent Bud Center crowd then saw a video of what Morse's every day experiences are like.
"I pretty much cried all the way through it," said Rochelle Morse, Macie's mother. "It's just unbelievable that this is all happening. Just the generosity of all the fans, the Ice and Deric Yaussi has been incredible."
Thursday, April 10, 2008
Kicker points worth more than wins for local teen
Colorado Ice kicker Deric Yaussi, left, has started a fund to benefit Macie Morse, right, who suffers from blindness caused by optic nerve hypoplasia. The fund, known as Kickin it for Macie, accepts pledge amounts for every point Yaussi kicks this season.
Kickin It for Macie
To help Macie Morse out, send donations to Macie's Vision Quest, c/o Warren Federal Credit Union, P.O. Box 1319, Wellington, CO, 80549.
What is optic nerve hypoplasia?
"Hypoplasia" means smaller than normal. Optic nerve hypoplasia (ONH) refers to small or underdevelopment of the nerve which transmits vision signals from the eye to the brain. This is usually associated with permanent vision loss, which may be mild or severe. ONH may affect either one or both eyes.Source: American Association for Pediactric Ophthamology and Strabismus.
Kicker's points worth more than wins for local teenBY SEAN DUFF SeanDuff@coloradoan.com
Every point Colorado Ice kicker Deric Yaussi scores is critical for his football team.
But the field goals and extra points he puts through the uprights are crucial for Macie Morse, a 15-year-old ninth grader who attends Wellington Junior High School.
Morse, an Idaho native whose family moved eight years ago to Wellington, was born with optic nerve hypoplasia.
The medical definition of hypoplasia means smaller than normal. Optic nerve hypoplasia refers to underdevelopment of the nerve which transmits vision signals from the eye to the brain.
In layman's terms, she can't see.
Morse, an articulate, thoughtful teen-ager, described it this way.
"It's the cord that connects from the eye to the brain that sends information from what your eye sees to the brain," Morse said. "That cord didn't fully develop. My left eye didn't develop at all; my right eye has a little bit."
Morse said she can see well enough out of her right eye to walk, and she can read print if it's 3 or 4 inches from her face. That's about the extent of her vision, though.
The impairment has made life difficult for Morse, her mother, Rochelle Morse, said.
"It's not pretty how she is treated at school," Rochelle said. "She gets made fun of a lot; she takes a lot of physical abuse. Kids are mean; they're awful, tripping her and pushing her into lockers and stuff."
It was during these trying times that Randy Yaussi, Deric's father and a longtime Poudre School District educator and coach, was filling in as principal at Wellington Junior High.
"He got to see how Macie was treated," Morse said. "He said he had to go into his office with tears in his eyes."
There is no treatment for OPN in the United States. But while searching the Internet one day, Morse came across a treatment program in China.
"They're doing stem-cell injections in China on kids with ONH that seem to be working," Morse said. "They're actually all different kinds of places - Mexico, Dominican Republic, South Africa. The reason we chose China is they're adding nerve growth as well."
Morse said the cost of the treatment and travel to China is about $30,000. And that's where the Yaussi family came up with a plan to help raise money for Macie Morse.
"I've known Macie for a while," said Deric Yaussi, a former Poudre High student whose mother, Carol, and Rochelle Morse work together at the school. "I wanted to do something to help her get her sight. The best position for me playing for the Ice was to have a fundraiser. I can raise money for every point I make."
So Yaussi started Kickin It for Macie, where people can pledge any amount of money for every point he makes in the United Indoor Football league season or just give an outright donation. The Ice (1-3) plays its home opener tonight against the Billings Outlaws, and Yaussi has scored 35points in the first four games.
"She's a great girl," Yaussi said. "Some of the things she's had to go through, like getting her head pushed into a locker, are things no one should have to go through."
Rochelle Morse said about $2,000 has been raised so far. She's hoping the Kickin It for Macie campaign will bring her family much closer to their goal of $30,000. The family is hoping to go to China by Christmas.
"The more I score, the more I help the team and help Macie," Yaussi said. "It benefits both."
Macie, who describes Yaussi as a "football hunk," says she is very happy at having a chance to see.
"I can't imagine what it would be like," Macie said. "I've dreamt about it forever.
"My first thing I want to see is my mom. Then I want to see as much as possible."
http://www.coloradoan.com/apps/pbcs.dll/article?AID=/20080410/SPORTS/804100352/1006/SPORTS
Kickin It for Macie
To help Macie Morse out, send donations to Macie's Vision Quest, c/o Warren Federal Credit Union, P.O. Box 1319, Wellington, CO, 80549.
What is optic nerve hypoplasia?
"Hypoplasia" means smaller than normal. Optic nerve hypoplasia (ONH) refers to small or underdevelopment of the nerve which transmits vision signals from the eye to the brain. This is usually associated with permanent vision loss, which may be mild or severe. ONH may affect either one or both eyes.Source: American Association for Pediactric Ophthamology and Strabismus.
Kicker's points worth more than wins for local teenBY SEAN DUFF SeanDuff@coloradoan.com
Every point Colorado Ice kicker Deric Yaussi scores is critical for his football team.
But the field goals and extra points he puts through the uprights are crucial for Macie Morse, a 15-year-old ninth grader who attends Wellington Junior High School.
Morse, an Idaho native whose family moved eight years ago to Wellington, was born with optic nerve hypoplasia.
The medical definition of hypoplasia means smaller than normal. Optic nerve hypoplasia refers to underdevelopment of the nerve which transmits vision signals from the eye to the brain.
In layman's terms, she can't see.
Morse, an articulate, thoughtful teen-ager, described it this way.
"It's the cord that connects from the eye to the brain that sends information from what your eye sees to the brain," Morse said. "That cord didn't fully develop. My left eye didn't develop at all; my right eye has a little bit."
Morse said she can see well enough out of her right eye to walk, and she can read print if it's 3 or 4 inches from her face. That's about the extent of her vision, though.
The impairment has made life difficult for Morse, her mother, Rochelle Morse, said.
"It's not pretty how she is treated at school," Rochelle said. "She gets made fun of a lot; she takes a lot of physical abuse. Kids are mean; they're awful, tripping her and pushing her into lockers and stuff."
It was during these trying times that Randy Yaussi, Deric's father and a longtime Poudre School District educator and coach, was filling in as principal at Wellington Junior High.
"He got to see how Macie was treated," Morse said. "He said he had to go into his office with tears in his eyes."
There is no treatment for OPN in the United States. But while searching the Internet one day, Morse came across a treatment program in China.
"They're doing stem-cell injections in China on kids with ONH that seem to be working," Morse said. "They're actually all different kinds of places - Mexico, Dominican Republic, South Africa. The reason we chose China is they're adding nerve growth as well."
Morse said the cost of the treatment and travel to China is about $30,000. And that's where the Yaussi family came up with a plan to help raise money for Macie Morse.
"I've known Macie for a while," said Deric Yaussi, a former Poudre High student whose mother, Carol, and Rochelle Morse work together at the school. "I wanted to do something to help her get her sight. The best position for me playing for the Ice was to have a fundraiser. I can raise money for every point I make."
So Yaussi started Kickin It for Macie, where people can pledge any amount of money for every point he makes in the United Indoor Football league season or just give an outright donation. The Ice (1-3) plays its home opener tonight against the Billings Outlaws, and Yaussi has scored 35points in the first four games.
"She's a great girl," Yaussi said. "Some of the things she's had to go through, like getting her head pushed into a locker, are things no one should have to go through."
Rochelle Morse said about $2,000 has been raised so far. She's hoping the Kickin It for Macie campaign will bring her family much closer to their goal of $30,000. The family is hoping to go to China by Christmas.
"The more I score, the more I help the team and help Macie," Yaussi said. "It benefits both."
Macie, who describes Yaussi as a "football hunk," says she is very happy at having a chance to see.
"I can't imagine what it would be like," Macie said. "I've dreamt about it forever.
"My first thing I want to see is my mom. Then I want to see as much as possible."
http://www.coloradoan.com/apps/pbcs.dll/article?AID=/20080410/SPORTS/804100352/1006/SPORTS
Sunday, April 6, 2008
Girl looks to gain sight in China
Associated Press
April 6, 2008
Sedalia, Mo. — Rylea Bartlett can see the freckles on her grandmother’s face and distinguish lip gloss on her mother’s mouth.
The 6-year-old’s progress has raised the hopes of another young girl who has the same optic nerve disorder.
Savannah Watring and her family are making arrangements to travel to China, where they hope an experimental treatment will give the 7-year-old sight.
“I can’t help but get excited,” said RaVana Watring, Savannah’s grandmother.
Savannah was born with optic nerve hypoplasia, the leading cause of blindness in children, according to Cassandra Fink, supervisor of clinical trials at the Vision Center in Children’s Hospital Los Angeles.
It happens when the optic nerve fails to develop in utero, but doctors aren’t sure what causes the condition. Swedish researchers found it occurs in 10.9 children per 10,000.
ONH can cause hormonal problems and developmental delays, but loss of sight is the only condition Savannah has experienced.
Savannah’s family noticed early on that she rolled her eyes around a lot and that noisy places bothered her. At about 8 weeks, they noticed her eyes weren’t tracking objects like normal babies do. A Columbia ophthalmologist confirmed what they had feared: Savannah was blind.
“I kept thinking it was something that could be fixed,” RaVana Watring said. “And when they said it couldn’t, and never, I fell apart.”
The family’s hope brightened in September, when they read a story in The Sedalia Democrat about a Missouri girl with ONH who began seeing after stem cell treatments in China. They contacted Dawn Bartlett, Rylea’s mother, and learned her vision has been steadily improving since the treatment.
Savannah’s family has started the process of traveling to China, where they’re expected to spend about 30 days as she receives four to five stem cell treatments. The stem cells, taken from umbilical cords, are injected into the spine and are expected to generate growth of the optic nerves.
Fink is skeptical, saying she’s only heard of three or four children who have had the procedure and that the risk of doing it in China is unknown because they don’t know the research behind it.
It hasn’t stopped Savannah and her family.
The procedure is expected to cost about $50,000 and the family has started a fundraising campaign, already gathering around $20,000 through a dance, donation cans and sales of clothing and jewelry. A benefit dinner, raffle and auction are planned Dec. 9 in Tipton.
http://www2.ljworld.com/news/2008/apr/06/girl_looks_gain_sight_china/
April 6, 2008
Sedalia, Mo. — Rylea Bartlett can see the freckles on her grandmother’s face and distinguish lip gloss on her mother’s mouth.
The 6-year-old’s progress has raised the hopes of another young girl who has the same optic nerve disorder.
Savannah Watring and her family are making arrangements to travel to China, where they hope an experimental treatment will give the 7-year-old sight.
“I can’t help but get excited,” said RaVana Watring, Savannah’s grandmother.
Savannah was born with optic nerve hypoplasia, the leading cause of blindness in children, according to Cassandra Fink, supervisor of clinical trials at the Vision Center in Children’s Hospital Los Angeles.
It happens when the optic nerve fails to develop in utero, but doctors aren’t sure what causes the condition. Swedish researchers found it occurs in 10.9 children per 10,000.
ONH can cause hormonal problems and developmental delays, but loss of sight is the only condition Savannah has experienced.
Savannah’s family noticed early on that she rolled her eyes around a lot and that noisy places bothered her. At about 8 weeks, they noticed her eyes weren’t tracking objects like normal babies do. A Columbia ophthalmologist confirmed what they had feared: Savannah was blind.
“I kept thinking it was something that could be fixed,” RaVana Watring said. “And when they said it couldn’t, and never, I fell apart.”
The family’s hope brightened in September, when they read a story in The Sedalia Democrat about a Missouri girl with ONH who began seeing after stem cell treatments in China. They contacted Dawn Bartlett, Rylea’s mother, and learned her vision has been steadily improving since the treatment.
Savannah’s family has started the process of traveling to China, where they’re expected to spend about 30 days as she receives four to five stem cell treatments. The stem cells, taken from umbilical cords, are injected into the spine and are expected to generate growth of the optic nerves.
Fink is skeptical, saying she’s only heard of three or four children who have had the procedure and that the risk of doing it in China is unknown because they don’t know the research behind it.
It hasn’t stopped Savannah and her family.
The procedure is expected to cost about $50,000 and the family has started a fundraising campaign, already gathering around $20,000 through a dance, donation cans and sales of clothing and jewelry. A benefit dinner, raffle and auction are planned Dec. 9 in Tipton.
http://www2.ljworld.com/news/2008/apr/06/girl_looks_gain_sight_china/
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
Sunday, February 17, 2008
A Ray of Hope
One note for correction the treatment does not cost $75,000 it costs $18,000 $24,000
K
A ray of hope
Ellicott family is trying to raise $75,000 to take blind son to China for a stem cell treatment not approved in the U.S.
By BRIAN NEWSOME
2008-02-17 01:12:00
THE GAZETTE
Blood from an umbilical cord is injected into the spine. In a matter of weeks, or even days, children who were born sightless report being able to see more light and make out shapes. It sounds as if it could be the latest treatment offered at a top university hospital. And Katrina Stewart’s efforts to procure the procedure for her visually impaired son are like those of thousands of parents who canvass the country in search of health care’s latest offerings of hope. The difference is, this is China.
Stewart, who lives in Ellicott, is trying to raise $75,000 to take her 7-year-old boy halfway around the world for a stem cell procedure praised as a miracle cure by parents and patients but questioned by some scientists in the West who want more proof that it works. The government of China has spent millions on the biotech industry and is extending its advancements to patients worldwide. One Chinese company benefiting from the invest- ment, Beike Biotechnology, Co., offers the umbilical stem cell therapy to Americans at a time when regulation and politics have stymied such procedures in the U.S. Umbilical stem cells are not from embryos, a subject of intense political debate. Even so, these stem cell procedures have been criticized by some research purists who say the treatments lack the extensive clinical tests required of medical advancements here. Beike and its advocates argue that Western bureaucracy is keeping life-changing care from patients who can’t wait decades. For Stewart, the question is simple: Can it help Brandon? She is soliciting people for tens of thousands of dollars in hopes that her son — visually impaired since birth — can recognize faces and distinguish steps from cracks in the sidewalk. They would be small victories his doctor here admits he’ll likely never have with treatment that’s available in the U.S. Beike has treated eight children with Brandon’s form of blindness, and all have reportedly gained increased sight. Stewart doesn’t expect 20/20 vision for her son. She just doesn’t want to be left with the what-ifs. “I’m willing to accept any outcome, but if I don’t try I will always wonder.” Health risks, so far, have been low. The two main risks, infection or a misplaced needle in the spinal canal, have never occurred, according to Beike. Brandon’s story When he was 6 months old, Brandon Stewart was diagnosed with optic nerve hypoplasia, in which the optic nerve fails to fully develop in utero. It’s one of the most common causes of childhood blindness. Brandon, a soft-spoken child with a penchant for cupcakes, does not live in total darkness. He can make out a few colors and foggy objects or people when they are just a few inches in front of him. Yet he fears cracks in the sidewalk because they appear to be steps, and trees because their branches hit when he gets too close. In 2004, the Stewarts left Garden City, Kan., for the Pikes Peak region, where Brandon could attend The Colorado School for the Deaf and the Blind and have access to better health care. Katrina quit her job as a Finney County sheriff’s deputy. Her husband, John, quit his job as an assistant manager of a trucking company. He owns a dump truck and is self-employed. She helps him run his business. The boy, who had fallen behind his schoolmates in Kansas, has flourished at the Colorado Springs school. Even so, his parents struggle to come to terms with his blindness. Katrina Stewart said Brandon admires his dad and talks about wanting to drive some day. Such statements hurt. “It’s hard for me to tell him that he can’t because of his eyes,” she said. She said it’s emotionally difficult to explain the world around Brandon that his 12-year-old sister, Courtney Harris, and 2-year-old brother, Nicholas Stewart, can see for themselves. “Going up to the mountains, he sits there and looks bored or looks down,” she said. A story of hope Late last year, Stewart saw a news report about a girl about Brandon’s age who had the same condition. The girl had been treated by Beike, Stewart said, and her family reported that she could see in ways doctors here hadn’t thought possible. The story made Stewart cry. She turned to the Internet and found a world of similar claims from parents and patients: Children with severe visual impairments could recognize their parents and the world around them. That led her to Kirshner Ross-Vaden, a suburban Chicago nurse who is Beike’s vice president of the Foreign Patient Division and lead medical consultant. The 7-year-old company began taking foreign patients in 2005. Since then, it has treat ed 2,500 people, Chinese and foreign, for a variety of ailments, including brain injuries and degenerative diseases. Although Beike reports a 100 percent success rate for optic nerve hypoplasia, results for other medical problems have been mixed. The Stewarts applied for treatment, and Brandon was found to meet the criteria. That, though, may have been the easy part. The Stewarts concede that raising $75,000 to pay for a little-known treatment thousands of miles away could be a tough sell. Already, one organization, which she asked not be named, declined to help. Other people have confused umbilical stem cells with embryonic stem cells, which have been hotly debated as a rightto-life issue. The family’s dump truck business has been sluggish this winter. And although other families pursuing the treatment have taken out a second mortgage or tapped their home equity, the Stewarts rent their home. Persuasive stories The family’s pitch includes stories of children such as 2-year-old Cameron Petersen. The boy was 3 months old when he was diagnosed with optic nerve hypoplasia and pituitary problems that left him blind and sickly, said his grandmother, Carol Petersen, of Port Charlotte, Fla. “He was at Children’s Hospital more often than not,” she said. Today, she said, he plays like a healthy child and appears to see new objects. In her mind, there’s 90 percent improvement. She points to a time in church when Cameron began looking up at the bright lights. “Cameron started turning in circles watching these lights,” she said. On another occasion, the boy’s brother took a toy out of a diaper bag. Cameron looked at his brother and took the toy back. “I know that there was no way on earth that Cameron possibly could have done that before,” she said. Adult patients, too, have returned from China with tales of newfound abilities from the same treatment. Jim Savage, a Houston lawyer who became a quadriplegic after a diving accident, told The Associated Press in a recent story about the procedure that he was able to move his right arm again for the first time after his accident. He also reported greater abdominal strength and more sensation in his skin. How it works At Beike, which works with several Chinese hospitals, umbilical stem cells are injected into the spinal canal, where they essentially bathe the spinal cord and brain. Because the cells have not yet become specialized, in theory they can repair damaged nerve cells and restart the development of healthy ones. Dr. David Lee, Brandon’s Colorado Springs ophthalmologist, called it an “interesting idea.” Considering the lack of options available here and the seemingly low risks of the procedure, he said he was not opposed to the family’s plans. “I think that it’s one of these things where it makes sense that it could potentially help,” he said. At the same time, he said, the Stewarts should temper their expectations. With the expense and travel, there’s potential for disappointment if significant results don’t come. Beike, and China’s biotech industry in general, have taken criticism from some Western doctors who fear the treatment is being rushed to the marketplace without the scientific rigor of places like the United States. They say patients’ testimonies could result from a placebo effect, in which — considering the cost and the journey — they simply believe there has been change. Petersen dismisses that idea. “His favorite cartoon,” she says about Cameron, “instead of putting his ear toward the sound, now he’ll look at the TV. He just sits there and stares at it.” Ross-Vaden, the Beike representative who was in China and answered questions by e-mail, said the company has kept extensive documentation and is now translating its information from Chinese to English. She said China has outpaced the U.S. in biotech science because the government has made it a priority and funneled millions into biotech. It could be a decade or two before Beike’s procedures come stateside, if at all, she said. Patent disputes, the politics over embryonic stem cells and a preoccupation with clinical trials are roadblocks to approval in the U.S., she and others said. A middle ground Dr. Peter A. Singer of Toronto’s McLaughlin-Rotman Centre for Global Health was part of a team that conducted an in-depth study of China’s biotech industry, including Beike. The study was published in January’s edition of “Nature Biotechnology.” He considers himself a Beike “agnostic.” As a physician, he believes patients’ stories matter, while as a scientist he also believes people eventually deserve hard proof that something works. Beike, he said, needs to find a middle ground between anecdotes and proven data. “There comes a point in time where families like the one in Colorado deserve a better answer than ‘Well, we think it works or we wouldn’t be doing it, and you should just come and give it a try.’” Katrina Stewart, though, needs no convincing. She talks of the children like Brandon who have been treated having a “brightness” about them when they look around. She said she’ll continue to learn Braille, help Brandon adapt to his dark world and come to terms with his disability. The difference, she said, is being able to say to herself she’s tried everything. At the same time, expectations are hard to hide. On a sunny afternoon at the school, where she and John have come to pick Brandon up for a doctor’s appointment, she talks about the trip. When Brandon asks why they would go to China, she tells him his eyes are “broke” and need to be “fixed.” The boy asks, “If they don’t fix them what are we going to do?” She cries.
http://www.gazette.com/articles/brandon_33218___article.html/beike_stewart.html
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