We all know about Alzheimer's Disease. Now, imagine your child has something like it. That's the reality for a local family. Monday night, the Lehigh Valley Steelhawks indoor football team raised money for them.
Twelve year-old Adam Recke might just be the most popular guy at Starter's Riverport Pub.
"Ah, he's a great kid," said his dad, Sean Recke.
But he's also a fighter, literally in the battle of his life. Adam has a disease so rare, he shares it with only four others in Pennsylvania and less than 200 nationwide.
"It's any parent's worst nightmare," said Adam's father.
Niemann-Pick Type C is often called "Children's Alzheimer's" because its symptoms and progression are so similar: dementia, trouble balancing, and tremors. NPC destroys cells by building up excess cholesterol. Like Alzheimer's, it is always fatal. It is also almost always misdiagnosed. Adam's father spent six years finding out why his son was sick.
"What we were told when he was diagnosed was that he was going to lose the ability to walk, he was going to lose the ability to talk, and he was going to lose the ability to swallow," he said.
That is why the Lehigh Valley Steelhawks spent Monday night behind the bar at Starter's Riverport Pub in Bethlehem, raising money for their twelfth man.
"Adam, that's our buddy," said coach Robert Britt. "That's our team buddy."
As heartbreaking as Adam's story is, there is some hope on the horizon for him and others with his disease. Adam is testing a new drug that, along with others, is showing promise. Also, earlier this year, Notre Dame researchers discovered a compound that may correct NPC's cell damage.
But Adam's dad is a realist, and he knows that cure may come too late for his son. He hopes events like this will raise money for a cure, and hopefully reach a frustrated parent who still hasn't gotten the proper diagnosis.
"It's not very easy being out in front of a TV talking about your son and the devastation that we're facing," he said, "but we need to do it because we need to save these kids."
Recke said researchers are close to developing a simple blood test for NPC that may dramatically reduce the diagnosis time.
If you eat at either Starter's location anytime in October, and bring in this flier, ten percent of your bill will be donated to the Race for Adam Foundation.
For more information on the Race for Adam click here.
For more information on the National Niemann-Pick Disease Foundation click here.