In February 2017, the Kahn family received news that no one wants to hear. Their 7-year-old twin daughters, Amelia and Makenzie, were losing their vision due to a rare genetic disease. The diagnosis of juvenile Batten disease came with a team of doctors, a slew of support from family and friends, and a goal of finding a cure.
Batten disease is a rare, fatal, inherited disorder of the nervous system that usually begins in childhood. Symptoms include vision loss, seizures, and eventual loss of motor function. There is currently no cure for Batten disease. ForeBatten is on a mission to change that.
Today, the girls are learning to adapt to their worsening vision. They attend 1st grade, love to read and do art, play soccer in their backyard and learn about zebras, monkeys and penguins. Their favorite authors include Anna Walker and Jane Goodall.
In the coming months and years the girls will visit more than their fair share of doctors and be subject to more than their fair share of tests. Our hope is to support clinical trials and research to help the girls and all children who face this heartbreaking disease.