Thank you for visiting our site.  Please be sure to sign our guestbook and say hello to Jacob.  You can also help spread awareness by inviting others to visit this site.

IMG_7423 Jacob is a fun, loving 10 year old boy who can melt your heart with his smile.  He loves playing with his plastic characters, drawing, watching movies, 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. In addition to Batten Disease, we were told in 2011 that he also has Mitochondrial Disease which is another disease with no cure. Jacob amazes us every day with his strength to battle not one but two diseases. We are truly Blessed with our faith and love and support from family and friends.
Jacob has been busy in the news. Check out these articles or the interviews on the links above:
Please help support our efforts to fund Jacob’s special medical needs as they arise as well as contribute to finding a cure for Batten Disease.