NEWS FLASHOn Sept. 30, ABC’s Extreme Makeover showed up at the Woodhouse home announcing that the family will soon have a brand, new home, thanks to the television show. To be continued … Kayla Woodhouse isn’t able to sweat, and she feels pain only if it’s 25 to 30 times the intensity of what the average person senses. She also suffers from allergies and severe eczema. But none of it keeps her down.Ten-year-old Kayla has a good-natured disposition, despite her atypical health issues, said family friend JoAnn Seeker. The disease is “nothing like you’ve ever seen in your entire life,” she added.Kayla was born with Hereditary Sensory Autonomatic Neuropathy, a rare nerve disorder. Only 20 people in the world have HSAN. The inability to sweat and insensitivity to pain are the primary symptoms of the disorder.Kayla’s mother, Kim Woodhouse, said after she gave birth to Kayla and her brother, Joshua, who is now age 12, she suffered from post partum depression and didn’t leave the house often. Woodhouse said she thinks this could have saved Kayla’s life.”When Kayla was 14 months old she passed out from the heat, which started the saga,” Woodhouse said.When Kayla was 1 1/2 years old, Woodhouse heard Joshua screaming. She found Kayla covered in blood. Joshua told his mother that Kayla had taken a block away from him, so he hit her on the head with it. Joshua was the one crying, not Kayla.Woodhouse said Kayla in her sleep would tear her skin scratching the eczema. She couldn’t feel the pain from scratching too deep. And the scratching left her prone to infections.It took a year and six months for Kayla to be diagnosed, Woodhouse said. “Just because she looks normal doesn’t mean there isn’t something wrong,” she said.Dr. Gabrielle Gold-von Simson, center staff physician at the New York University School of Medicine Dysautonomia Treatment and Evaluation Center, said HSAN is not one single condition but a family of diseases that is very rare. “HSAN is an umbrella term. There are actually about six to seven types of HSAN,” Gold-von Simson said.Little is known about the disorder, but Gold-von Simson said HSAN results from a gene mutation during pregnancy.Gold-von Simson said HSAN treatments include supportive and preventive care, such as avoiding extreme temperatures and a hot climate, maintaining good hydration and monitoring fluids.The Woodhouse family has intensely researched HSAN, and Woodhouse said hundreds of doctors have seen Kayla. Many specialists are not familiar with HSAN. “One of the doctors tried to prepare us by saying, ‘You’re never going to meet anyone with this disorder, and you’re never going to meet a doctor who has dealt with it,'” Woodhouse said.To add to Kayla’s health issues, in March 2006, an MRI showed Kayla’s skull was not big enough for her brain, Because of the HSAN, she couldn’t feel the pain normally associated with the condition. Kayla had brain surgery in September 2006.Today, Kayla spends most of her time indoors. The temperature outside must be below 55 degrees or she could pass out or die from heat stroke. Woodhouse said if Kayla is affected by heat stroke, she can hardly move for a month. Their house is kept at 62 degrees, she said. “She (Kayla) can’t tell when she is getting too warm, and by the time she notices it’s too late,” Woodhouse said.When Kayla is outside or going in and out of buildings, she wears a special vest designed by NASA that contains a cooling liquid. Woodhouse said they paid thousands of dollars for the vest initially, but it’s now available through other vendors for less than $500. The vest needs to be replaced as Kayla grows, Woodhouse said.Woodhouse home schools Kayla and Joshua. Kayla’s dad, Jeremy, is the second pastor at Falcon Baptist Church. Woodhouse said they relocated from Alaska to Falcon because of the constant medical care that Kayla needs.Kayla’s medical care is a financial strain, Woodhouse said. The family was without health insurance for nine months after moving to Colorado. Insurance companies considered her too high risk and too costly. Kayla’s prescriptions alone cost $1,500 per week, and state insurance companies estimated it would cost about $250,000 to $300,000 per year to treat Kayla’s condition, she said. Her brain surgery cost about $500,000.They have health insurance now, Woodhouse said. Their pediatrician wrote off some of their bills, and they’ve survived through donations. “We have gotten a lot of help from the community,” she said. “We love it here.”Many people in the community are moved by Kayla’s spirit.Local Realtor Jody Heffner met the family through a business affiliate. Hefner said he’s disheartened by Kayla’s health problems but enlivened by her attitude. “It’s great to see their daughter’s soul and how happy she is,” Heffner said.”She has a great attitude,” Seeker said. “She really is a great kid.”Woodhouse said Kayla is “upbeat,” and her disorder is not visible to people. “She is an everyday kid you would see in the park,” she said. “She just can’t go to the park.
