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Beyond Surprise and Shock
Learning Your Baby Has Special Needs By Kelly Burgess
The Power of KnowledgeShilo Young of Oregon City, Ore., sees her daughter, Ashly, becoming her own person more obviously each day. "In school, she loves science and recess the most and is totally enthralled with lava and volcanoes," says Young, laughing. "I had to take her to see Mount St. Helens because she was just so interested in the whole subject."
Ashly, 9, was born with an extremely rare skeletal disorder. At first, the doctors thought Ashly had Down syndrome, but tests came back negative. They warned Young, however, that there was definitely something wrong with her daughter. They just didn't know what it was.
Young went into denial, a typical reaction for parents when doctors can't provide a definite diagnosis. "Ashly was having some sort of little seizures, but she seemed so normal in every other way that I refused to believe she was sick," Young says. "Finally, when she was about 18 months old she completely stopped growing. That's when I realized that there was a problem."
Unfortunately, the medical community couldn't figure out what the problem was, so Young began to do her own research. Thanks largely to her efforts, Ashly was eventually diagnosed with geleophysic dysplasia, a disease related to dwarfism.
Dr. Robison encourages this kind of parental involvement. He also strongly encourages parents to join support groups, which he notes are available in every state. "It's important that peopleget reliable, factual information about their child's condition so that they know what they're dealing with," Dr. Robison says. "I wanted to know not just what my child couldn't do, but what she could. What made her different, and how was she the same as my other child? There's a lot more research for some conditions than others, but the primary thing is just to become as informed as possible."
