Carl Kapes: "You kind of hit that low spot. Then you have to pull yourself up and say - this is what we're.......your kids get you going."
There's no treatment or cure for San Fillippo syndrome. In fact, it's so rare, most drug companies aren't interested in it.
Earlier this year, Kapes and other San Fillippo families won a $250,000 Pepsi Challenge grant. Now they are taking aim at another quarter-million dollars offered by the Vivint company.
Carl Kapes: "We're bent on finding a cure for this. Even if we can't save our children, if we can save another family from going through this, then it makes our crusade worth it."
To find out more about the campaign and connect with Team San Filippo, click here.