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Stem-cell treatment in China helps Missouri 6-year-old see light
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 months ago is now seeing colors.
"We are not sure yet what the outcome will be," Juli said. "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, Mo., 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.
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," Juli said. "She notices more light. It used to be she could see it only a foot away, now she can see it 6 to 8 feet away. She can see a flashlight and point to it."
All the medical attention has prompted Lydia 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," Joan said.
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 writes and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.
Juli is 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 said. "We pray for full sight and function, but at the same time, we take it step by step."
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