Ten-month-old Carlin Foley looks like any normal happy and healthy baby, but unlike babies, every eight hours he needs medicine to help him produce hormones to keep him alive.
“He has CAH Congenital Adrenal Hyperplasia via the newborn screening he has at the beginning of life. So we found out at four days old… So he has had a few hospitalizations, but we have never heard of CAH before,” Carlin’s mom Mindy Foley said.
One in 18,000 babies are diagnosed with the genetic disorder. Yet many people haven’t heard of it. That’s why Foley wanted to organize Regina’s first-ever Carlin and Blake’s 1st Annual Fun Run for CAH.
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“He doesn’t make cortisol — it is one of the major ones and it’s the hormone that deals with the stress of injury or illness,” Foley said.
Foley expected about 50 people to show up, but more than 200 walkers and runners made it out to show their support.
Blake Setrum is also living with the disorder. It’s the first time the 10-year-old has been a part of a CAH walk.
“I think it’s pretty cool. I think it’s important that people are raising awareness,” he said.
“It’s very rare and a lot of people don’t even know about the condition at all. We have even had doctors, nurses ask questions — they don’t have all the information either,” Blake’s mom Lynette Setrum said.
Blake also takes medication every eight hours, and that allows him to do what other kids do.
“I play football, I like to play with my friends, I like waterslides,” he said.
“It’s great to see him doing so well,” Lynette said.
These are the kinds of stories Mindy wants to hear. It lets her know her son’s future is still as bright as ever.
“It’s overwhelming. I can’t even put words to it,” she said.
The hope is that they can keep the walk as an annual event. Money raised this year went to Teddy Bear’s Anonymous, a charity that gives bears to sick children in the hospital.
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