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A Davis Shores family is hoping an innovative new treatment not available in the U.S. will give their daughter sight. The girl and her mother plan to travel all the way to China in January for stem cell treatment that has offered hope to patients previously considered incurable.
Rylee Lovett wears glasses, but even with them, she can't see more than a few inches in front of her face. That's because the 6-year-old also suffers from a rare congenital condition known as Optic Nerve Hypoplasia (ONH).
ONH is one of the three most common causes of visual impairment in children and results from underdevelopment of the optic nerve during pregnancy. Because nerves cannot repair themselves, the condition is largely considered incurable.
"She's legally blind," said Rylee's mother, Shayla Lovett, 29. "The glasses are for astigmatism."
"She was diagnosed when she was four months old," Lovett said. "The doctors told us that until they can grow nerves, there's nothing that can be done. It's like how Superman (actor Christopher Reeve) couldn't get out of the wheelchair, because of the nerve problem."
After doctors told Shayla Lovett her daughter's vision would never improve, she resigned herself to the prognosis. She enrolled Rylee at the Florida School for the Deaf and the Blind, where she attends kindergarten.
But Lovett never gave up hope.
Searching the Internet for information on ONH, she came across the story of a Missouri child, Rylea Barlett, who also had the condition and had successfully obtained sight from the treatment.
"Of course, as soon as I found out about this treatment, I thoroughly researched it," Lovett said. "Their results have been amazing thus far. Even though there are no guarantees, I feel like it's something we have to try."
What she found was a Chinese company called Beike Biotechnology. Beike is a biotechnology company that provides stem cells for treatment at hospitals in China and Thailand.
Because stem cell research and treatment are legally limited in this country, the new procedure, pioneered by nurse and medical researcher Kirshner Ross-Vaden, is not available here.
However, Beike does not use embryonic stem cells, which are the subject of most of the controversy. Instead, doctors use stem cells taken from the blood of umbilical cords from live births, which had historically been discarded after birth as medical waste.
Carol Petersen, a Port Charlotte woman whose grandson, Cameron, was successfully treated by Beike at China's Hangzhou Hospital in September, has nothing but good things to say about the treatment.
"It's incredible, simply incredible," Petersen said by telephone. "Cameron could not see at all before the treatment, and now he can. After the second treatment, he began to recognize things we held up about two feet from his face and to crawl toward toys we put on the floor. These are things he'd never done before."
Lovett said she is not concerned with the political side of the issue. She just wants Rylee to be able to see.
"I've done a lot of research on this, and have been following them pretty closely," Lovett said. "Four children have now received the treatment, and they've all been successful."
Dr. David Klein is a Port Charlotte ophthalmologist who has also studied the procedure. He deals with many children with ONH and has talked with some of the families who have gone to Beike for treatment.
He believes it is a legitimate procedure that should be taken seriously as an option. He has recommended the treatment to parents of children with ONH.
"They're doing good work there," he said. "Naturally, I'm cautious about endorsing new procedures, especially something that isn't done in the U.S. And I don't send people out for every weird new treatment that comes down the pike.
"There seems to be some good science behind this."
Klein said there is a misconception that, because the procedure isn't legal here, it must be suspect. And, he said, people might think Chinese medicine is inferior to that in the U.S.
Not so, Klein said.
"The level of ophthalmology in China is surprisingly high," Klein said. "In fact, the level of medicine as a whole in China is high."
Lovett said she and her husband, Jason, 32, are working to raise the funds necessary to get Rylee the treatment. All told, including travel, accommodations and other expenses, they need about $60,000, she said.
One way they came up with to generate money is to raffle off one of the family cars, a blue 1999 Saturn. The Lovetts are selling raffle tickets for the car for $20 each, and they may be purchased through Rylee's Web site, at http://www.blessherwithsight.com/ .
"The car is in excellent mechanical condition," Lovett said. "It was my car in college, and it's very dependable."
Additionally, donations to the Rylee Lovett Fund may be made at any VyStar Credit Union branch.
Lovett said they hope to have the necessary funds by the end of the year, and that they'd like to take Rylee to China in January.
Despite her sight limitation, Rylee seems to be a well-adjusted child. She takes piano lessons and enjoys playing with her sister and brother, Lorelei, 4, and Jonas, 3. She moves easily through the Lovett home, and is full of energy. Whether she understands the extent of the treatment or even why she'd be going, it's clear she's hoping to make the trip.
"I want to go to China," she said, smiling. "I want to see."