Three years ago, Carl Kapes’ two young children were diagnosed with Sanfilippo Syndrome—a rare genetic disease that causes progressive damage throughout the body.
The disease affects one in 240,000 births and those diagnosed with the syndrome usually only live to be 10 to 15 years old. There is currently no treatment or cure.
The news was as devastating as it gets, but Kapes managed to stay positive. “You’re down in the corner,” Kapes says. “You have a choice—you can cry about it or pick yourself up. Even if we can’t save our children, we can help others down the road.”
Kapes and a group of parents in the same situation formed the nonprofit Team Sanfilippo Foundation to fund research for treatments and a cure. The foundation has raised about $1 million through golf tournaments and other fundraisers.
But Kapes says he needed to up the ante on the effort, in part because he can’t keep turning to the same people for donations.
“It sucks to have to tell someone your kids are dying, but you have to get the word out,” he says. “The amount of people impacted by this is so miniscule. When you’re not impacted, you don’t notice. I had to find a different way to impact them.”
So, he’s climbing Mt. Kilimanjaro—the tallest mountain in Africa—from Aug. 3-12 to raise awareness and funding for therapies. Kapes landed sponsors, received equipment donations and has gotten publicity from Philadelphia radio station WMMR.
In the interest of getting the climb done in an acceptable time frame, Kapes and his fellow climbers will be taking the toughest trail. Kapes admits that while he’s athletic, he’s no mountain climber.
“I’m a desperate parent. I don’t have much of a choice,” he says. “My kids need me to do this to have a chance.” teamsanfilippo.org—Drew Ostroski