|Sight in sight for London|
|Optic Nerve Hypoplasia|
|周日, 30 8月 2009 11:15|
There are no translations available.
Source: Adirondack Daily Enterprise
1-year-old accepted into Chinese program that could allow her to see
SARANAC LAKE - Due to the outpouring of support from people around the Tri-Lakes, a 1-year-old girl is close to getting a treatment that may allow her to see.
After tentative initial acceptance, London Ruby Call's family received, this month, her official acceptance letter into the experimental program in China. They plan to schedule the trip soon, said Ruby Britton of Lake Clear, London's grandmother.
After three-quarters of a year of fundraising, Britton, her daughter Jessie Call and son-in-law Brandon Call, both of Saranac Lake, are just $8,200 shy of the $50,000 they have been trying to raise to pay for the treatment that they hope will bring sight to the little girl.
London turns 2 on Nov. 27, and Britton said she plans to schedule the treatment, in which the baby will be injected with umbilical-cord (not embryonic) stem cells, starting the first week of December. She said the center wanted London to start treatments on Sept. 11, but not enough money had been raised yet for the family to go then.
But the community has been working hard to help raise funds. In recent months, the Moose clubs in both Saranac Lake and Tupper Lake have had benefits for London, the Lions Club in Saranac Lake held a St. Patrick's Day dinner, the Methodist church in Saranac Lake held a pancake breakfast, some local day-care providers held a bake sale at Aubuchon Hardware, there was an ice-skating benefit at the Saranac Lake Civic Center, Mountain Lakes Academy in Lake Placid had a bake sale, and Blueseed Studios hosted a fundraiser with magician Tim Dumas. A Pizza Hut in Missouri, where some of London's relatives live, even held a fundraiser.
"There's been a lot of people who have really helped her," Britton said. "Words won't even express how much it means to us that people have been doing that."
Britton has a thick envelope of clippings and memorabilia from each of the events, which she is saving for when London is older.
"I've been trying to save everything so that when she gets her eyes, she can see what everybody's done for her," Britton said.
London has 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.
She has been slower to develop than most babies. At 21 months old, she can only speak about four words, and she can't walk or move much on her own. Since she can't see, she has nothing to imitate.
"So there's no 'monkey see, monkey do,'" Britton said.
Britton said the family is starting to notice that London gets frustrated with her slow development and shakes her fists. When she does that, they will give her a musical instrument, because she likes to play with them and hear the sounds, Britton said.
London also has diabetes insipidus, a treatable condition that occurs when the kidneys are unable to conserve water as they perform their function of filtering blood. She would dehydrate and die without medicine that controls her water conservation.
The 35-day treatment of stem-cell injections is supposed to grow and regenerate the missing parts of her brain and eyes, Britton said, and the family also hopes it will correct her diabetes as well.
"But, you know, there's no guarantee," Britton said.
The stem-cell treatment, which would be performed by Dr. Kara Zhang and the staff of Shenzhen Beike Biotechnology Co. Ltd. at the Zhejiang Xiaoshan hospital in Hangzhou, about 100 miles from Shanghai, is a controversial one that is still in the experimental phase.
Britton said that so far, the only side effects that have been detected are headaches that last a few hours, and nausea and vomiting.
About 130 people have had the treatment, Britton said, and almost all have had good results. About 10 people have seen only limited results, but they were all much older than London.
"The younger they get it done, the better results that they've had," Britton said.
Over the 35 days of treatment, London will receive stem cells some days, and do physical and occupational therapy and get acupuncture and massage treatments on others. While the staff will monitor London for changes while she is there, most of the changes are expected to come once the little girl is back in the U.S., Britton said.
When they arrive, a blog will be set up in China for them to share their experience there on stemcellschina.com. Britton had gotten her daughter a new laptop so she could write whenever she wanted to from China, but Jessie's apartment was broken into recently and the laptop was stolen.
Since she, her daughter, her son-in-law and London will all need plane tickets, which she expects to cost around $1,600 per person, and they will have to pay for room and board for 35 days in China, Britton said she is getting concerned about the costs of the trip.
"I hope I've planned enough money for it," she said.
They have enough money to cover the cost of the stem cells, so she said she plans to schedule it as soon as her daughter and son-in-law receive their passports.
Britton said some people have been looking into whether they can donate air miles to the family to alleviate some of those costs.
"It's overwhelming sometimes," Britton said. "You just want to cry because there's just so many kind people in the world."
Donations can be made to London R. Call at P.O. Box 794, Saranac Lake, NY 12983.