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It’s not so easy being a superhero

By: ANDREA BROWN THE GAZETTE
May 20, 2006
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This 9-year-old girl can touch hot burners and chew glass. She can walk barefoot in snow. She has a rare neurological disorder that lowers her sensitivity to pain and cold.
A Colorado summer day could kill her. Kayla Woodhouse’s body lacks the ability to regulate temperature. Cooling functions — sweating — don’t kick in until her body reaches a lethal high temperature. Her skin is overly dry. She wears a special vest with NASA-designed cold packs. She can only go outside to play after sundown. The house thermostat must stay below 62 degrees. Kayla has incurable hereditary sensory autonomic neuropathy. “Nationwide, there are a handful of cases, at best,” said her pediatrician, Dr. Margot Crossley. The disorder has taken Kayla’s parents, Kim and Jeremy, far from their sultry Louisiana roots. Kayla wasn’t diagnosed until she was 14 months old, after passing out on a rare trip to a playground. Her mom said the reason it took that long was a godsend. “I had postpartum depression and never went anywhere except to church,” she said. “The doctors said if I had gotten her out, she would have died.” To save Kayla, they first moved the family, which includes Josh, 11, to Alaska. There, the biggest worry was Kayla running outside in 15-below without shoes, but the state also proved too far from medical centers. A year ago, the family moved to Colorado Springs for the mild climate. Jeremy Woodhouse’s job as associate pastor at Falcon Baptist Church pays the mortgage on their $220,000 Stetson Hills home. Kim Woodhouse homeschools their children and gave private vocal and piano lessons that put food on the table. Those extra dollars put the family income over the limit for state health coverage for low income families that don’t qualify for Medicaid. To keep their eligibility for the health plan, the mother quit giving music lessons. Without her extra income, they couldn’t afford to stay in their home. When the Woodhouses contacted Keller Williams Partners Realty about selling the house, agent Jeff Morrell went to work — doing everything possible not to sell it. His office is trying to let the family stay put. “We wanted to take the stress away, let alone the stress of moving thrown into the mix,” Morrell said. “The goal is to raise $100,000 so they can refinance it so the mortgage payments are less.” There’s a rummage and bake sale today at the Keller Williams office at 1307 Aeroplaza Drive. A golf tournament and car raffles are in the works. Several agents at the Aeroplaza Drive office will donate their commissions if clients mention Kayla’s name. The tall, blonde Kayla looks healthy. She jumps around the living room, clutching an oversized teddy bear. She has lots of energy but limited places to go. “I might want an indoor playground,” she said. She rides her bike after sunset. Swimming is her only sport, and it’s good for keeping her body temperature in check. But she’s limited to private, indoor pools. She plays with her brother, who knows better than to fight with her. “If I pinch her, it doesn’t hurt,” he said. “She pinches back — hard.” Through the back patio door, she watches her two puppies grow up. Church is the only time she’s around other kids, but she’s always under the watchful eye of Mom. “She’ll be playing and doesn’t want to stop. She pushes herself too hard,” Kim Woodhouse said. Kayla likes to cook and sew. Even these can be hazardous. “She’ll start to reach into the oven without a mitt,” her mom said. Her first sewing lesson a few years ago was a disaster: Kayla sliced her stomach with scissors and didn’t realize it until blood was spilling everywhere. “She doesn’t feel pain until it’s 20 to 30 times the normal intensity,” Kim Woodhouse said. “You realize what an asset it is to feel pain.” Still, it’s better than when Kayla was a fearless toddler. She chomped on Christmas lights. She’d slam into walls. “She was a daredevil and would dive off of things,” her mom said. “We had to duct tape socks to her hands so she wouldn’t scratch too hard.” The eczema remains a problem. Kayla digs at the sores in her sleep. She doesn’t dwell on her condition. When her dad talks about the good fishing in Alaska, Kayla reminisces with him. “Now we worry about the heat issue, making sure she stays cool enough,” her mom said. “What’s normal to us is not normal to other people.” They carry spray fans. They pack a cooler with ice packs for Kayla’s special vest and drinks to keep her hydrated. The air-conditioning stays on year-round. “Our house is freezing. Our friends leave sweat shirts here,” Kim Woodhouse said. CONTACT THE WRITER: 636-0253 or andrea.brown@gazette.com
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