Jacob is a fun, loving 8 year old boy who can melt your heart with his smile.  He loves playing with his cars, playing sports, being outside, going anywhere as long as it means we are “going out to eat” (even though he doesn’t really eat) and playing with his big brother Nick and little sister Sophia, as well as making his little brother Joshua laugh.

In April of 2008, our lives turned upsidedown. Jacob was diagnosed with Neuronal Ceroid-Lipofuscinoses (NCL), also referred to as Batten Disease. Over time, children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually they become blind, bedridden and unable to communicate. There is NO CURE and the disease is always fatal. For more info about this disease, please go to www.bdsra.org.

Jacob has been busy in the news. Check out these articles or the interviews on the links above: