Fighting for a cure.
Our mission is to build awareness for Batten Disease, advocate for healthcare reform, fundraise to support research efforts, and support out-of-pocket expenses associated with care for our son, Sam.
I am rare.
Sam has CLN2 or Late Infantile Batten Disease. This disease is marked by seizures, and the loss of motor skills and cognitive ability. The life expectancy of a child with this disease is 8 to 12 years old. Fortunately for us, there is a treatment for CLN2 that does not exist for the other variations of the disease that could slow the onset of symptoms for our son. However, this is not a cure. Join us in the fight to find a cure by donating or purchasing items in our storefront.