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| Shepherdsville Girl With Rare Disease is Helped by Treatments in China |
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| Batten Disease | |||
| Mercredi, 17 Septembre 2008 22:07 | |||
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There are no translations available. Source: Courier-journal  By Melissa Gagliardi Miranda Goranflo took her daughter's foot in her hands, carefully working it back and forth to loosen a tendon. It's one of many techniques she learned in China to help her little girl, who suffers from a rare genetic disease. Miranda and Hailey Goranflo recently returned to Shepherdsville from a seven-week trip to Beijing, where doctors injected the 5-year-old with stem cells to help combat the effects of late infantile Batten disease, which causes seizures, dementia, blindness and death between ages 8 and 12. An estimated 250 children suffer from the disease nationally, including Hailey's brother Carter, 3. Before heading to China, Hailey suffered hundreds of seizures a day, slept as much as 20 hours a day and was on extra oxygen to help her breathing. She was so sick that her mother was afraid she might die before the trip. But since returning home Aug. 28, Miranda Goranflo and her husband, Neil, have seen a number of improvements in their daughter. Hailey, who will turn 6 next month, no longer requires daily oxygen treatments and is stronger. She's awake nearly all day, and she suffers only a handful of seizures a day. "Her eyes are much brighter. … We don't think we're going to lose Hailey anytime soon, now," Miranda Goranflo said. Hailey grew 3 inches and gained six pounds during the trip. She didn't wear shoes while in the hospital, and when her mother dressed her before going home, she had outgrown them. "Before, she was always small for her age, and now she is wearing the appropriate-size clothes," her mother said. "She has made so many improvements." But Hailey still has a long way to go. She still doesn't walk or talk, and she's losing her vision. In China, doctors spent hours each day massaging Hailey, working different muscle groups and loosening her stiff joints, techniques her mother now uses for hours each day. And every day, she says the word "Mama" to her daughter, hoping one day, she'll hear it back. "They showed me how to work every single muscle in her body," she said. She uses her hands to squeeze Hailey's chest to help her breathe, and she pulls Hailey up from lying flat to help strengthen her neck. "Very good, Hailey!" she told her daughter as she pulled her arms to hold her up in a sitting position. In China, Hailey underwent some unexpected treatments, like receiving de-proteinized calf blood intravenously and doses of creatine, which body builders use to build muscle. Her mother said some people questioned the family's decision to go to China for the controversial stem-cell treatments, but while there are experimental therapies in the United States that promise to extend life, Hailey's condition is most likely too advanced for her to benefit. "We knew that in going over there, we had done everything we could possibly do," Goranflo said. She said that if Carter isn't accepted into any U.S. treatment programs soon, the family will plan for him to go to China too. She already plans to take Hailey back in January for her second round of treatments. Three rounds are recommended. The trips are being paid for through fundraisers like an upcoming demolition derby scheduled at the Bullitt County Fairgrounds, and Goranflo said without community support she might never have seen so many improvements in her daughter. So far, $110,000 has been raised for the family. "We never expected the amount of support we've gotten from our community," she said, adding that before the fundraisers began, she and her husband had discussed selling their house and cars to get Hailey help. "We're glad we followed our hearts to do what was best for her. Now we're very hopeful for the future," she said. "I'm so glad we could bring her home and show her off to everybody and let everybody see what they've helped us do."
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| Mise à jour le Jeudi, 18 Septembre 2008 22:10 |