Feeling No Pain Part Two
(MAPLETON, IA) - Wednesday night we brought you the story of Isaac Brown. He's a five-year-old Mapleton, Iowa boy who can't feel pain. He's scorched his hand on a hot stove. He's even broken a leg and couldn't feel a thing. Thursday night features a closer look at his struggles and the search to find a cure.While most of us love the sand, the sun and the heat. For Isaac they can be deadly. "They did ask us if he could sweat. I thought that was a strange question, but the answer was we didn't think so. We had never seen him sweat as a baby. You know how you take a baby out of a car seat and they're wet in the back of their head from sitting in the car seat? Nothing," said Carrie Brown, Isaac's Mother. Not being able to sweat and stay cool is a major symptom of Isaac's inability to feel pain: 'Congenital Insensitivity to Pain'. "This is his cooling vest he wears when he gets too hot. There is these cool packs that look like frosting, frozen frosting," said Carried showing Isaac's vest. But even with all his cooling equipment, Carrie says it's still not safe for Isaac to live life like the rest of us. "I don't know how I could send him to school not knowing Something that I have to think about the normal parent doesn't is what's the temperature in every room I walk into. I have to be thinking about that when I walk into the grocery store, when we go to church or when we go to any place," said Carrie. "At this point, we know that there is one gene that causes congenital insensitivity to pain and that's a nerve growth factor," said Dr. Deborah Renaud. Dr. Renaud works at the mayo clinic in Rochester, MN where geneticists are testing Isaac's blood to find a mutated gene. "We don't know how to prevent the condition. We do know that most children inherit the condition in what's called an autosomal recessive pattern in which case both parents are carriers for the condition," said Dr. Renaud. In the meantime, the Browns do have a safe haven they can rely on once a year: "Camp painless but hopeful". "He gets to hiking and rock climbing and what else?" asked Carrie. "Going boating," said Isaac.
"Oh yeah. We get to go boating," said Carrie. The entire bBown family drives to Georgia in October to spend one week together without a worry. "He gets to do summer stuff that he doesn't get to do here because it's too hot, but in November in Georgia it's 65 degrees which is perfect," said Carrie. A place where they meet other families with kids who feel no pain like 13-year-old Ashlyn Blocker who created the camp herself. Carrie describes meeting ashlyn's mother for the first time. "It was like we were sisters or best friends. You know I had never ever met her in my life. And here is this woman that walks every single day in my shoes. She walks every day," said Carrie with tears in her eyes. Back home, Isaac just turned five as we head into summer. Despite his condition, the Browns hope he can enjoy life like any other kid. "I'm really thankful for Mayo Clinic for doing the research. We never know what they might come up with next year. There's always that hope that they might come up with something, some way to possibly treat this," said Randy Brown, Isaac's Father. For now, Isaac and his mother continue home schooling and continue to look forward to the day a cure will come. There is some good news for the Browns. Band Aid brand has agreed to pay for all of the families that attend "Camp Painless But Hopeful" this fall.
That means the Browns will save more than $1,200 - money they could desperately use.