Karen and David Kahn were elated to welcome twin girls Amelia and Makenzie into the world in 2010. But after just 18 months, Amelia began having speech issues. At age two, she was diagnosed with Autism. Life became a daily struggle with Amelia’s behavioral issues. In early 2017, both girls started experiencing vision issues, and shortly after, the Kahns received the devastating news that both girls had been diagnosed with juvenile Batten disease (CLN3); a rare and fatal genetic disorder of the nervous system which leads to vision loss, seizures, and loss of speech and motor function.
The Kahn family’s life now consists of adapting to their daughters’ vision loss, daily struggles with childhood dementia, managing frequent seizures, modified school schedules, and a multitude of doctor appointments. They do their best to create a safe, happy life for their girls despite the fate that lies ahead of them. They are driven by the hope that a treatment or cure can change the future for all children affected by Batten disease.
After receiving the girls’ diagnosis in early 2017, the Kahn family created The ForeBatten Foundation. “Fore” means “ahead” or “forward,” and those familiar with golf know it’s a term you hear when something unavoidable is heading your way—much like Batten disease. The Kahn family is taking a swing at Batten disease, and with your help, the Kahn family can raise money to fund future research studies to help all children affected by Batten disease.
ForeBatten’s mission is to provide funding, support and hope for the Batten community. We work tirelessly to give children with Batten disease the best possible life, to spread awareness of the urgency to fund new treatments, and to help all families affected by Batten disease.
We are working with researchers as they develop multiple therapies to detect, treat and potentially cure Batten disease. Rare diseases like Batten do not receive the same government assistance as other, more prevalent diseases, so we must join together as parents and caring individuals who are not willing to accept the fate of our children.