Noah & Laine

Noah, 04/21/2004 - 03/26/2016
Laine, 01/11/2006 - 03/20/2018

Rare diseases take away so many things. In our family, a rare disease shattered our dreams, took away our normal everyday life, and stole our children's future, but it will never take our love or our hope. Noah and Laine developed normally through their preschool years, giggling, talking, and chasing each other in the backyard. Out of nowhere, they began having seizures, tripping, dropping their spoons, and stumbling over words. After a year of testing, Noah was diagnosed first. As we talked with the doctor, we went from joy at finding an answer to absolute devastation.

~Jennifer, Noah & Laine’s Mom

CLN2 Batten Disease

Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. The first symptom is usually progressive vision loss in previously healthy children followed by personality changes, behavioral problems, and slow learning. Seizures can begin at any time during the course of the disease, and it tends to worsen with age. Progressive loss of motor functions start with clumsiness, stumbling, and Parkinson-like symptoms. Eventually, those affected become wheelchair-bound, develop psychiatric symptoms, are bedridden, and die prematurely.

Artist: Dan Lake