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| Eyeing a Remedy |
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| Optic Nerve Hypoplasia | |||
| Miercuri, 07 Mai 2008 08:00 | |||
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There are no translations available. Source: Delmarva Now  WATTSVILLE -- Thousands of people will travel to China this summer to attend the Olympic Games. Brad Tullous, 13, of Wattsville also is planning a trip there -- to Qingdao, a city on the northeast coast that is the site of Olympic sailing events. But Tullous' purpose is not to see the Olympics, but merely to see. Tullous, a seventh grader at Holly Grove Christian School in Westover, Md., was born with a rare disorder called optic nerve hypoplasia that left him partially blind. He and his father, Todd, will fly to Qingdao in June so Brad can undergo a month-long experimental treatment they hope will improve his sight. Brad has no vision in his left eye and very limited vision in his right eye due to a birth defect that prevents the optic nerve from developing properly. After two weeks, his mother, Amy, will travel to Qingdao to take Todd's place so he can come home to care for the couple's two younger children, Caleb, 8, and Olivia, 4, and return to his work as manager of Monumental Insurance Co. in Pocomoke City, Md. "I'm just going to have so much to tell when I get back to school," said Brad last week, adding that school and church friends have been "really supportive." The treatment and travel together will cost the family $45,000 and means they will be apart most of the summer, but Amy Tullous said it is worth it. "We are willing to do anything to give Bradley the chance at an easier life, even if it means traveling across the world and raising money," she wrote in an e-mail. Holly Grove school and other local groups are rallying to help the Tullous family raise funds for the trip and treatment, which is not covered by medical insurance. Casual Fridays this month at the school will allow students to forgo uniforms for a $5 donation. And on May 27, a concert and silent auction at the Chincoteague Center will feature the Holly Grove honors choir along with other musical groups and an auction of original works donated by local artists. Finding a cure Amy Tullous first found out about the treatment on the Internet last January and contacted the company that developed it. She also read testimonials from other families whose children have been helped by the procedure. During the treatment, stem cells taken from banked umbilical cord blood will be injected into Brad's spinal fluid in a series of procedures over a month-long period. The cells, considered the body's basic building blocks, are able to transform into many other cell types, including optic nerve cells. The technology was developed by Beike Biotech, a Chinese company formed in 2005 that has over 60 scientists, some from the United States, working on stem cell research. Of over 2,000 patients who have been treated for various ailments, 70 to 80 percent report they are satisfied with improvements, according to the company Web site. A dozen children with ONH already have been treated at the China facility. All have shown some improvement, Amy Tullous said. Doctors told her it will take up to a year after treatment to determine how much vision Brad will gain as the optic nerve develops. The stem cell injections are not available in the United States and are not covered by medical insurance because they have not been federally approved for treating the disorder -- although the FDA has approved the use of cord blood stem cells that come from live births for over 80 other conditions. In China the procedure has been used to treat diseases ranging from Alzheimers to autism and spinal cord injury, in addition to ONH. When Brad was two months old, doctors at Children's Hospital of the King's Daughters in Norfolk told his parents he would likely be totally blind and would have to use Braille to read and a cane to walk. Nothing could be done to cure him, they were told. They credit the prayers of the Chincoteague Church of God, where they are members, and other area churches with improvements in Brad's vision that began four months later. "I heard from every church on the island that they were praying for him," Amy Tullous said. "It seemed like he just started reaching for toys after that." But Brad's vision is still very limited. In his current condition, he could not drive a car, for example. His parents see the new medical technology as one more example of God's blessing. "We've never stopped praying that God would do a miracle," Amy said, adding, "When I found this Web site, I just prayed, 'God, if this is what you want us to do, just smooth the way.'" Brad was accepted for treatment in the Chinese program after finding a doctor at John Hopkins Medical Center's Wilmer Eye Institute in Baltimore, Md. who agreed to do the necessary medical testing prior to reatment and to track his condition for one year afterwards. "We believe that it's God who did this," Brad said. "It's not a trial; it's an adventure." He returns to the United States Aug. 5 -- three days before the Olympics begin. The Tullous family has a Web site where donations can be made at http://www.bradleysblessing.com . To donate by mail, send checks made out to Todd Tullous to 7501 Wallops Mill Pond Road, New Church, VA 23415.
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