Tianjin, China has largest umbilical cord stem-cell storage

Researchers store umbilical cord blood in the stem-cell storage bank in Tianjin in an undated photo. (Photo: Tonight Paper)
BEIJING, Dec. 31 -- Tianjin now has the largest umbilical cord blood stem-cell storage in the world.
The number of stored stem cells derived from umbilical cord blood has reached 100,000 specimens, twice the amount stored in the New York Cord Blood Bank that previously had the largest number of stem cell samples.
The umbilical cord blood bank in Tianjin is among the first batch of blood banks that have passed the state health watchdog's examination. And it is also among the first batch of blood banks accepted by an organization on Asian cord blood banks, according to a report in the Tianjin-based Tonight Paper on Sunday.
Many diseases are treated with stem cells, including Parkinson's disease, Alzheimer's disease, damaged livers and malignant tumors. Stem cells are increasingly being used in many other clinical treatments.
The stem cell bank in Tianjin has received about 1,000 domestic and international medical inquires for type matching. It has provided stem cells for 150 medical cases so far.

Amaya has finsihed her stem cell treatment in China

As most of you know Amaya, a 4 year old girl with Optic Nerve Hypoplasia from Virginia Beach was in China over the holiday’s to receive her stem cell transplants.
Amaya is the 5th child in the world to receive treatment. Upon arriving in China she had some minimal level of light perception but only to bright light shined directly into her eyes at close range and her pupil response was very sluggish and minimal. She was considered to be legally blind and has had no improvement over the years in her eyesight. Amaya also had severe delays in both motor function and speech. She also is so orally defensive that she must be feed via a PEG tube.

She has just left the hospital in China and returned home and I am very happy to announce that she has indeed had some improvements. Her motor function and speech have both shown improvements as well she appears to have had visual changes as well. Her mother has reported that the night prior to leaving the hospital Amaya reached out accurately targeting her mom’s hands and grabbed her mother’s finger, she has never done this before and needless to say Ebony her mother was very surprised when it happened. Amaya is also responded with a greater reaction to the flash light test. In addition when the doctors place their hand in front of her face she becomes very unhappy and irritated. Prior to treatment she did not respond in anyway to having someone place their hand in front of her. This is an indication that she call see now that something is in front of her. Since Amaya has delays in her speech we can not ask her to tell us if and/or what she sees thus we have only this subjective data to go on but it does appear that she has responded with visual changes/improvements as a direct result of the stem cells.
Once she is reexamined by her stateside ophthalmologist we will have a clearer picture of what type and level of improvements have occurred. I will of course post an update at that time.

Here is a to her web site:
http://www.amayaslight.com/web/do/site/home?ID=274375

Horses can get stem cells in the USA and insurance pays for it so why can't we

Humans not the only animals confronting the ramifications of stem cells, steroids
By Wesley Elford
I recently attended the very elite American Association of Equine Practitioners annual convention.
It is the continuing education event of the year for equine veterinarians. The most cutting-edge information is presented in the areas of reproduction, surgery, medicine and farriery. I was really impressed by the progress that is being made in all areas.
The use of stem cells has now become an accepted procedure in treating lameness in the horse. Equine medical insurance companies are covering the treatment of joint injuries with stem cells. Fat cells from the patient are used as the source of cells to culture and obtain stem cells. These are injected into injured or diseased joints. The stem cells are used by the joint cartilage or joint capsule as a source of cells to contribute to faster and more complete healing of the arthritis. The use of umbilical blood for the source of stem cell of the horse is also being perfected.
Whether for horses, humans or giraffes, genes carry the blueprint for all life on earth. Thanks to advancements in animal sciences, a specific gene of a specific horse can be looked at and identified as being healthy or not. A gene for certain diseases can be determined to be on the chromosome of a particular horse or not — and breedings can be arranged to avoid the propagation of that individual that would have a particular disease. Lethal white in paint horses would be an example.
Steroids are a problem in equine athletes also. The same type of steroid is available for normal medical use on our equine patients. These steroids are called anabolic or androgenic steroid, meaning they cause a build up of body tissues by affecting the metabolism to act in a positive and regenerative way.
The Delaware Thoroughbred Racing Commission has come out with a ban of such steroids. This racing commission has decided that they do not want horses racing with these steroids in their bodies. It takes 120 days for the steroids to come out of the horse's body. Therefore, by announcing the ban now, the horses that will be racing at the start of the spring meet in April will be all free of the drug. Horses are tested on race day in a random fashion, both with blood and urine taken. If a horse were found with steroids in its body there would be severe repercussions to owners and trainers.
Obviously, humans aren't the only animals that are performance "enhanced" with mind and body altering drugs. The beneficial use is to treat sick and debilitated animals that need to be stimulated to feel better, to eat more and to adjust what they eat to regenerate tissues and to create lots of energy. But this use should not be done to artificially make a horse stronger or more energetic. It is amazing how man can manipulate everything to his benefit.
Medicine is good and is needed to see that animals are kept healthy and strong so that they can perform up to their maximum. A horse should be asked to perform based on its own innate ability, however, not based on how man can manipulate that performance.

Comment from Stem Cell Girl:
OK how sad is it that horses have greater access to stem cell treatments in this country than we do and how irritating is it that a horse can get its stem cell transplants paid for by insurance companies but we as human beings can not.
If I am a horse in the grand ol’ USA with a joint injury I can have effective treatment with stem cells and my insurance will pay for it but if I am a human with the very same condition not only will insurance not pay for my treatment but I would have to go so far as to leave the dam country to get treatment.
This is so infuriating to me. All these patients I work with from the USA would be better off and get better medical care if they were a horse!
Good lord what is wrong with our system or perhaps I should say what is not wrong since that would yield a shorter list!
Just a small morning rant.

China trip gives St. Charles man hope

By Josh Stockinger Daily Herald Staff


Dave Ozzello of St. Charles went to China in August for umbilical cord stem cell treatment of multiple sclerosis, which he has battled for more than 30 years.


Dave Ozzello's walking cane isn't getting much use these days. As for his skis, well, that's a different story.
The St. Charles man, who has battled multiple sclerosis for 31 years, reports a drastic reduction in symptoms since going to China in August for umbilical cord stem cells.
His energy's up. His balance is better. And this week the 51-year-old was hitting the slopes in Colorado.
"I have not used my cane since I came back," Ozzello said of the treatment, not yet available in the United States.
"Does it cure the disease? Absolutely not," said Ozzello, who first told his story to the Daily Herald in July. "But I absolutely would go back and do it again."
Research suggests cord blood stem cells are particularly useful in treating auto-immune diseases, such as multiple sclerosis, juvenile diabetes and lymphoma, where the body essentially attacks itself.
While the cells haven't been shown to cure these conditions, some medical experts believe they are capable of at least slowing symptoms by replacing damaged cells with ones capable of new growth.
Ozzello received four injections over four weeks in China.
The treatment, which costs $19,500, is considered experimental, but having received similar injections in other countries, Ozzello said he knew the benefits and had "high expectations."
After the first two injections, given intravenously, Ozzello said he immediately recognized an improvement in his balance. The other two, given directly into the spine, took some time to net noticeable differences.
While he still uses a brace on his right leg, Ozzello said, the circulation to his feet has returned. He's even felt good enough to shovel the drive.
Generally, he said, "I just feel a whole lot better."
Ozzello said it's been nice not needing his cane, though he did use it once to move a clock hanging up high in the kitchen.
The former competitive skier -- who spoke to us shortly before Christmas --planned to spend the holiday in the Rocky Mountains, where he was to hit the slopes for the first time since returning from China.
"I can guarantee you I'll do all right," he said.


Thought from Stem Cell Girl:


Last night I laid in my bed seeing Dave on the slopes I too have run and knowing that I helped him put his skis back on. It was a good feeling to fall asleep knowing he could again feel the rush of the speeding snow.

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 in China offers girl hope for vision

China offers girl hope for vision

By Sarah Nail
SEDALIA DEMOCRAT

SEDALIA, Mo. — She can belt out the songs of her favorite country singers and win prizes showing her paint pony, Benny. But Savannah Watring has never seen her Aunt Sherla's red hair. She has not seen her grandmother's lips silently mouth the words of the songs she sings. Savannah has never enjoyed the lights of the family Christmas tree. Savannah, 7, of Syracuse, was born blind. The little girl and her family hope this will be her last dark Christmas. The family believes an experimental treatment in China could give Savannah sight.
Savannah was born with optic nerve hypoplasia, which happens when a child's optic nerve fails to develop in utero. The condition can cause visual impairments to blindness, hormonal problems and developmental delays. In Savannah's case, her loss of sight is the only condition she has associated with ONH. Cassandra Fink, supervisor of clinical trials at the Vision Center in Children's Hospital Los Angeles, said optic nerve hypoplasia was the leading cause of blindness among children. The cause of ONH is unknown, but Fink said research had shown that it was neither genetic nor hereditary. Some think environmental factors during pregnancy may have something to do with the cause, but "we don't know how to pinpoint it," Fink said. Cases of ONH are undocumented in the United States. The closest figure researchers can find is a Swedish statistic that shows 10.9 children per 100,000 have ONH, or about one in 10,000, Fink said. Savannah's relatives recall her as a cranky baby. Her eyes would roll around, and noisy places seemed to bother her. "When she was first born, at about 8 weeks old, we got to noticing that she wasn't tracking like babies do," said Savannah's grandmother, RaVana Watring. Family members said they had thought something was wrong with Savannah's eyes, but tried to dismiss their concerns. An ophthalmologist in Columbia confirmed what the family 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." Savannah was tested to check for other complications associated with ONH, but doctors found her symptoms were isolated to blindness. Her left eye can differentiate between light and dark. 'FALSE HOPE'"Basically, they steered us away from the Internet because they said there was a lot of false hope out there," said Savannah's aunt, Sherla Hagerman. "If there would be anything that came out in the news, or any sort of media, we would get excited and listen and pay attention to it. But it never pertained to hypoplasia. It was always the retina or the eyeball itself." Savannah's parents, Brent Watring and Susie MacLaren, separated when Savannah was a baby, and Brent Watring received custody. He is on the road most of the time, buying and selling horses. RaVana Watring takes care of Savannah, and the girl's parents see her on weekends. MacLaren said that in the past, she's tried not to get too excited about potential cures. "I'm trying to be a little less cautious and a little more hopeful," she said. "I can't help but get excited about it." Hope for Savannah's sight came in an unexpected way, Hagerman said. "We never really gave up hope that there would be something there," she said. "We just didn't know when or how it was going to come to us, and never dreamed it was going to be in The Sedalia Democrat, to be honest with you. Something that we take for granted." Teresa Hiatt, a paraprofessional at Tipton Elementary School who works with Savannah, saw an article in the Sept. 9 Democrat about a Missouri girl with ONH who began seeing after she received stem cell treatments in China. She told the family to read the story. Hagerman's husband "held the paper up and I said, 'It's probably some false hope.' And he said, 'No it's not.' And I read it, and it's been crazy for six weeks. We have not stopped for one second," Hagerman said. She called Dawn Barlett, mother of Rylea Barlett, 6, who was featured in the article. The families have kept in touch. Rylea could see the large "E" on the eye chart shortly after she returned home from China, and her sight has continued to improve. "She can distinguish between lip gloss on her mom's lips and freckles on her grandma's face," Hagerman said. "She can actually say, 'Grandma, you have freckles,' and she can see them." 'RED TAPE'Barlett referred Savannah's family to a website to learn more about the procedure. RaVana Watring, her son, Savannah and MacLaren applied for passports and collected doctor's records for the trip. Family members have to send their information with a letter from China inviting them to the country to receive their visas. A woman in the United States will make the final trip arrangements. "You don't just go get a passport and say, 'I'm going to China.' There's a lot of red tape here that you have to go through," RaVana Watring said. The family is expected to stay in China for 30 days while Savannah receives four to five stem cell treatments. The stem cells, taken from umbilical cords, are injected into the spine in a procedure very similar to the way a woman in labor receives an epidural. The stem cells are supposed to generate growth of the optic nerves. "It's a matter, and I say a matter as a scientific matter of form, that's going to be thrown in the trash," Hagerman said of the stem cells. "That can actually heal something," said another aunt, Shonna Millsap. Savannah said she was excited, and not scared, about having the procedure. "We're going to go to the airport. Then we're going to go to China," she said. "We're going to get my eyes fixed, and they're just going to rub my back." The trip and procedure are expected to cost about $50,000. The cost has prompted a fundraising campaign by the family, with more than $20,000 raised through a dance, donation cans dispersed to various businesses, and sales of T-shirts, hooded sweat shirts and bracelets. A benefit dance is planned for Feb. 9 in Bunceton, Mo. "We'll sell everything we have to get her there, at this point," Hagerman said. Savannah's family has been touched by people's generosity. A young boy gave $5 at a Dairy Queen after seeing a poster about her. That's the nature of the community, RaVana Watring said. "This little community, they hang tight when someone's in need," she said.

My friend this to shall past

I am lost agian...

On the 23rd night things ain't bad but things ain't right

Are we falling or flying

Are we living or dying

I guess we'll never know

The air is so heavy it could drown a butterfly

if it flew to high

Things ain't good but things ain't boreing

Grace Potter

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.

Trinity girl to receive treatment in China for medical disorder

Daily photo by Brennen Smith
Jordan Stover, right, and her sister, Taelor.
By Ronnie Thomas
TRINITY — Jordan Stover sat beside her older sister, Taelor, in their Trinity home and opened Christmas gifts.
As she ripped the wrapping, their mother asked if she had gotten new shoes. Jordan jabbed a forefinger into the air.
“She’s saying, ‘Just a minute, I’ll let you know,’ ” Sabrina Stover said.
Jordan apparently hears and understands.
“Tell her to clean up her room,” said Stover. “She shuts down like a typical 12-year-old.”
But her vocabulary is limited to single words. For most of her life, the family searched for a diagnosis. They got it less than a month ago from a doctor at Columbia University Medical Center in New York. He identified glucose transporter type 1 deficiency syndrome in 1991. The genetic disorder doesn’t allow enough glucose to reach the brain through the spinal fluid.
Mother and child flew Wednesday to New York, where Jordan, a fourth-grader at West Morgan Elementary School, will be a part of Dr. Darrell De Vivo’s study group. They return Sunday.
From Children’s Hospital in Birmingham to the Mayo Clinic in Rochester, Minn., Stover sought to unlock the mystery. It finally came because her mother, Irene Woodall of Decatur, watched the news one evening shortly before Labor Day.
The story was about a Wisconsin woman, Vicki Barels, and her daughter, Brooke, then 9, their association with De Vivo and their subsequent trip to Hangzhou, China, where Brooke had stem cell treatments.
30-day treatment
Stover and Jordan plan to leave for the southeast China city April 1. Jordan will undergo similar treatments over 30 days.
Stover recalled the agonizing search for help. She said her daughter had her first seizure at 6 months of age and when Jordan was 18 months old, a doctor said, “Mom, go home and learn to live with it. This child will never do anything.”
Stover said she went to the Internet to find the television segment her mother had told her about. Within 20 minutes of seeing it, she had Barels on the phone.
“She told me it sounded as if Jordan had the same problem. She gave me De Vivo’s number,” Stover said.
“We couldn’t get Jordan’s blood work until Nov. 12 and sent it overnight. We got the diagnosis Nov. 20.”
Umbilical cords
During the interim, Stover made arrangements for China, which is separate from De Vivo’s work. She said the stem cells Chinese doctors use are not embryonic but are from umbilical cords of healthy babies.
Richard Stover said his daughter, who uses a walker, will undergo treatments and therapy six hours a day, six days a week.
$25,900 for treatment
He said doctors will give Jordan six different injections, intravenously or through spinal taps, at a cost of $25,900. He said insurance “pays zero.”
Sabrina Stover said dieting is the only treatment available in the United States for the syndrome. She will take a month’s supply of food for Jordan.
“She gets 2,500 calories a day, the majority coming from fat, butter and heavy whipping cream,” Stover said. “We tried the diet earlier for two years. Jordan was getting only 1,200 calories a day and was hungry all the time. Nutritionists know more now and have fine-tuned it.”
Stover said the syndrome is so rare that Jordan is only the 123rd case De Vivo has diagnosed.
“But my message is, don’t stop looking for assistance,” she said.
Taelor, 16, a junior at West Morgan High, said she and Jordan are close but they have their moments.
“We argue,” she said. “Who wins? Jordan does. She plays up to our parents.”

Big Adventure and A Cure

A big adventure, and hopefully a cure, is in store for young girl
By DAVID A. WILSONDemocrat Staff
Savannah Watring, 7, Syracuse, is headed for a big adventure and hopefully a cure for her handicap-blindness.
Savannah, who was born blind, is a student at Tipton Elementary School in JoAnn Huhmann's first grade class and plans to head for China to take part in an experimental medical procedure.
A benefit dinner, drawing and auction is being held on Sunday, Dec. 9, at the Tipton Knights of Columbus to help raise the estimated $100,000 needed to fund the travel, procedure, and post-procedure treatment.
At school, Savannah, daughter of Brent Watring and Suzie MacLaren, is assisted by an aid and, although she knows her classroom well enough to navigate safely, she uses a cane to negotiate the hallways inside the school and the sidewalks outside. Although some of the games the class plays must be modified in order for Savannah to participate, with assistance, she takes part in many group class activities.
In addition to regular classroom work, Mary Watkins and Marsha Metzner assist Savannah in her Braille studies and Jennifer Turner is her orientation and mobility instructor.
Savannah loves music, according to her family. When she was an infant, all of her toys were musical. She takes piano lessons, playing by ear, and really looks forward to going to the lesson each week.
Now, at age 7, she loves all kinds of music, especially favoring country music. Her favorite radio station is Clear 99.3, and she has met Carrie and Uncle Scottie.
Savannah has sung the national anthem for WRCA rodeo events, and also can sing the Canadian anthem. She also likes gospel music and sings at church. For this year, Savannah is cutting a CD of Christmas songs.
She also loves to horseback ride, and has her own pony named Benny. Savannah has taken part in a number of rodeos, winning more than 40 ribbons for first, second and third place in barrel racing, goat-tying, and when younger, mutton-busting. Because Savannah is blind, someone, usually her stepmother Hannah Kauffman, is beside her when she competes, but she and Benny seem to work very well together. Savannah is outgrowing Benny, but even when she is too big to ride him, he will continue to be a favorite pet on the farm.
According to her family, Savannah's blindness became evident at the age of about eight weeks, when it was noticed she was not “tracking” the way most babies do at that age. After visits to several doctors and a lot of tests, she was diagnosed with Optic Nerve Hypoplasia (ONH), and her family was told she would never see.
ONH is an underdevelopment of the optic nerves. According to information available, there is rarely any identifiable cause for ONH, or any particular group that falls victim to it any more than another. It is generally considered that there is no cure, but research in China has led to experimental surgical treatment which has shown some success.
The procedure uses umbilical cord-blood stem cells. Stem cells are harvested from the umbilical cord of a newborn, and transplanted into the patient. Although the process sounds simple, it isn't. It requires some specialized techniques and more than one transplant of an estimated 10 to 15 million stem cells.
Stem cells are undifferentiated cells that, after the right chemical signals are sent by the body, can develop into specialized cells. Cord-blood stem cells are abundant and some procedures using them appear to have yielded good results.
Savannah said she hopes to leave for China in late February or early March of 2008. Her parents and her grandmother, RaVana Watring, are accompanying her on the trip. She will first go to Shanghai. Grandfather Wayne Watring will drive them to the airport. Her other grandmother is Helen Hayes, Stover.
“Then we have a three-hour taxi ride,” Savannah said.
The taxi will take the family to Nanjing to the research medical facility to have the procedure done. As her family has said, “she has nothing to lose and so much to gain” from the procedure.
The fundraiser dinner, called “Hope for Savannah's Sight,” is from 11 a.m. to 2 p.m., on Sunday, Dec. 9, at the Tipton Knights of Columbus Hall, at a cost of $10 for adults and $5 for children ages 6-12. The auction begins at 1 p.m.
Those unable to attend the dinner, may help by sending a donation to: Save Savannah's Sight, care of Commerce Bank, 232 South Osage, Tipton, Mo 65081.
For information, call 660-298-3250 or 660-221-5006.
At the Tipton Elementary School, Savannah Watring works on learning Braille assisted by Mary Watkins. (Photo provided)

Bowling Green Baby Home From Research Study in China

Posted: 6:45 PM Dec 6, 2007Last Updated: 10:16 PM Dec 6, 2007Reporter: Tamara Evans

Bowling Green Baby Home From Research Study in China

A Bowling Green baby selected for a research study in China to help his eyesight is now home.
11-month old Jackson Blackford may look like your average baby, but there's more to this baby than meets the eye.
"He has a condition called optic nerve hypoplasia, it's an underdevelopment of his optic nerves"
Blackford was born with this condition that left him blind. For three and a half weeks he underwent four stem cell transfusions in China to help those nerves.
He was one of five children in the world chosen for a research study using umbilical cord stem cells.
"Not necessarily grow into big healthy nerves, but they would function better with the help of the stem cells," says Rachel Stayer, Jackson's mother.
An expensive process.
"About $60,000 dollars, none of it, not one penny is covered by insurance," says Stayer.
But a surgery with an end result worth every penny.
"Eventually the stem cells as they repair his optic nerve, he'll be able to pick up and see little objects," says Stayer.
Jackson's mother Rachel says they are already seeing improvements.
"He has since then pretty much gained alot of light perception that he didn't have before," says Stayer. "He also sits with his head up more and kinda looks around. Before he would sit with his head down," says Jackson's mother.
And there are alot of people this family wants to thank for that.
"Without the community we wouldn't have been able to take Jackson over there," says Stayer. "Without them, he may not be where he is now and its just gonna get better for the next 6 to 9 months," says Jackson's mother.
They aren't giving up on giving their baby sight anytime soon.
"I hate that he can't see, but it's definitely just God's grace that we have a possibility to help him," says Stayer.
Meanwhile, Jackson is still in need of a hyperbaric oxygen chamber that will help maintain his healthy optic nerve.
His family also plans to take Jackson back for another treatment in the next two years.

Click below for link to video:
http://www.wbko.com/news/headlines/12230236.html

2-year-old, family to travel to China for eye surgery

By Rachel R. BasingerTRIBUNE-REVIEW NEWS SERVICESaturday, December 1, 2007
Jessie and Josh Fend and her husband, Josh, never anticipated traveling to China for a surgical procedure. But in June they are hoping to do just that to try and give sight to their 2-year-old son.
At 6 months, Cody was diagnosed with optic nerve hypoplasia, or ONH.


"His eye is fine, but the optic nerve that connects the eye to the brain is only half there," said his mother, who is formerly of Scottdale. "He has some light sensory, but can't see anything else."
The couple felt something was wrong soon after Cody was born.
"As a baby he would not really focus on you, so we took him to a specialist who diagnosed him with ONH," Jessie Fend said.
After getting a second opinion from a specialist at the Cleveland Clinic, the couple searched to find what might correct the problem.
The answer was devastating: nothing.
"They told us that there was no kind of operation or even a transplant that could be done because they needed his own nerves to grow," Jessie Fend said.
The only glimmer of hope is an infusion of stem cells to help Cody's nerves to grow. But the stem-cell surgery has not yet been approved in the United States.
The Fends were patient. They watched their son grow and adjust one day at a time.
"He's a normal 2-year-old who throws temper tantrums and loves to play with my pots and pans rather than a roomful of toys," Jessie Fend said. "The only thing holding him back is his vision."
Family friends from Cranberry in Butler County who have a daughter with the same condition told the Fends of a possible stem cell surgery that could allow the optic nerve to grow and give Cody sight. The Fends were ecstatic.
The only drawback: The surgery is offered in China.
"When I first heard about it I thought 'Oh my gosh, this is great,' but we were a little nervous about going to a foreign country where we don't speak the language and putting our child's fate in their hands," Jessie Fend said.
After doing research, the family learned that the stem cells used in the surgery would be from umbilical cords and not aborted embryos or fetuses. They decided to try it.
But because their insurance does not cover such operations, they have to raise $50,000 to pay for the trip and the surgery.
"We'll be in China for three weeks while Cody receives the treatments and therapies," Jessie Fend said.
Cody will receive the new stem cells intravenously and through a spinal tap and then go through therapy to help him deal with his new sight.
"They need to get the brain to realize what it's seeing," Jessie Fend said. "Sight is one thing, but vision is another.
There have been five procedures done in China on American children that have produced good results, but there is no guarantee that the surgery will restore sight.
"We're still willing to try, because the worst that could happen is that it won't work and he won't be any worse off than he is now," Jessie Fend said. "But if it even restores sight just a little more than it is now, it will be well worth it to try and give our son some shot at a normal life."
Fundraising efforts started with a bit of seed money from family members.
Shirley Morgan of Scottdale said she and her husband are committed to doing what's needed for their grandson.
"We're a little worried about them going all the way to China, but this is something that definitely has to be done because it's the biggest chance we have right now for Cody," she said.
Recently the Fends, the Morgans and several other family members participated in the Butler parade and passed out literature and pamphlets about Cody's situation.
http://www.pittsburghlive.com/x/tribunereview/news/westmoreland/s_540666.html