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Optic Nerve Hypoplasia
Samstag, 30. Januar 2010 um 23:27 Uhr
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Source: Adirondack Daily Enterprise

SARANAC LAKE - The good news is that 2-year-old London Call's sight has definitely shown signs of improvement.

The difficult part is that she and her family have done all they can and now must sit back and wait for more improvements to come.

London, her mother Jessie Call and her grandmother Ruby Britton, circulation manager for the Enterprise, returned home to Saranac Lake last week after six weeks in China, where London received stem-cell treatments to try to correct her blindness.

Changes

The changes Call and Britton have seen are small but significant. After London's third treatment, her doctor brought her into a dark bathroom and shined a light in her eyes. To everyone's surprise, London's pupils dilated, something they had never done before.

Then, after her seventh treatment, London started covering her eyes, especially her left eye, whenever a bright light hit them, meaning that her eyes are starting to perceive light. At one point, the family was traveling in a van with a sun roof, and when the sun shone through the sun roof, London covered her eyes.

Being blind has slowed London's development of balance and vocabulary, but both areas are also showing improvements now that she's had the treatments.

London couldn't stand on her own before the China trip, but now she is able to stand for 15 to 20 seconds at a time on her own. She can also now push herself up from the ground when she tips over, another thing she didn't do before.

She is also saying more words now than she was before the treatments, Call said. SOD

London was born with septo-optic dysplasia, a rare condition that caused her to be born without a septum pellucidum, which separates the ventricles of her brain. Her optic nerves are not large enough to send a message to the occipital lobe of her brain, causing her blindness.

When they found out about her condition, Call and her husband Brandon were told there was nothing to be done. Only later did they hear about experimental stem-cell treatments being done with umbilical cord stem cells (not embryonic ones) at a hospital in Qingdao, China.

After a massive, year-long fundraising effort in Saranac Lake and the surrounding communities, the family raised about $50,000 to pay for the treatments and were on their way.

Dad


Call's husband Brandon tried to go with the family to China but couldn't get a passport, since he owes just over the threshold in child support payments for his 8-year-old son Cylas.

While the rest of the family went to China, Brandon picked up Cylas in Florida and took him to New Orleans, where he made some money working on a house.

The whole time the rest of his family was in China, Brandon said he had a lot of anxiety.

"Just not being there was horrible," Brandon said.

Treatments

London was given nine doses of a mixture of stem cells and a solution meant to help grow nerves over 35 days in China.

Doctors gave her five doses through IV, following them before and after with an IV of saline to flush the stem cells through her body. For these treatments, which took about a half-hour, Call and Britton were able to be in the room with London.

The remaining four doses were given through a spinal injection. She was supposed to get five lumbar treatments, which usually took about 15 to 20 minutes each, but one of the times she wouldn't sit still and doctors had to give her the stem cells through an IV instead. That time it took about an hour, Call said.

The spinal treatments were considered a surgical procedure, so Call and Britton had to stand outside the door to the operating room.

"It was really sad at times to hear her yelling, 'Da Da Da Da!'" Call said.

London didn't mind the IV treatments, but she wasn't a fan of the lumbar treatments because she had to lay flat for six hours afterward, which Call and Britton said was difficult to make her do.

Since she got home, London has become a little defiant.

"She doesn't like to be made to do anything, because for a month straight she was made to do physical therapy," Britton said. "She's just having her own little attitude right now. She'll get over it."

When they left China, Jessie said the doctors were very happy with the amount of progress London had made - most kids didn't see results until after they had returned home.

The Calls have to give the Chinese hospital updates at three, six and 12 months after their return home. Depending on the level of results, the hospital may ask London to come back to do more treatments if doctors think she can see more results, Jessie said, which is something they would have to talk more about if the time came.

In the meantime, it's tough to wait to see what further results London may have.

"We try not to get our hopes up but at the same time keep a watchful eye," Jessie said.

China

Jessie and Ruby had some trouble with finding food that they liked in China - real Chinese food is very different from American Chinese food, they said - but luckily they had brought a suitcase full of canned and boxed American food.

Even just getting used to Chinese culture was difficult, Jessie said.

"I'm happy to live in America even more now since we've been to a communist country," Jessie said. "It was much different, and it was definitely culture shock."

They didn't get out of the hospital much, but they did make a lot of good friends in the hospital, which Jessie said was probably the best part about their trip.

Blog

While they were in China, Ruby and Jessie kept a blog that recounted their experiences there. To find out more about their trip, go to stemcellschina.com/blog/londonruby.

Contact Jessica Collier at 891-2600 ext. 25 or Diese E-Mail-Adresse ist gegen Spambots geschützt, Du musst JavaScript aktivieren, damit Du sie sehen kannst. .

 

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