A rare neurodegenerative disorder has created a race against time for Hollywood producer Gordon Gray and his wife Kristen.
Both of the Grays' daughters — one 4 years old, the other 20 months old — were diagnosed with a form of Batten disease, a disorder that causes blindness, muscle problems and seizures in children, just months ago. The family quickly reached out to doctors and other families who'd battled the disease.
"As a mother, it was hard because unfortunately a lot of these families do not have children that are still living and hearing those stories early on was devastating because we do not want that to be our reality," Kristen Gray said, per CNN.
In Batten disease, or late infantile neuronal ceroid lipofuscinosis (NCL), genetic mutations keep cells from properly disposing of wastes in the body. The buildup of these wastes is thought to cause the neurodegenerative symptoms associated with the disease. Those living with the condition generally die between ages 8 and 12.
Currently, there's no specific treatment for Batten disease, and the Grays are aiming to change that. They recently started the Charlotte and Gwenyth Gray Foundation in a bid to raise funds for research that could potentially lead to a successful treatment. The Grays have relied heavily on social media like Facebook, Instagram and Twitter, but they've also gotten some help from the celebrity likes of Rihanna, Mark Wahlberg and Jessica Alba.
"We need to help accelerate the research because we are in a race for time," Kristen said.
Facilitating that research won't happen overnight, as is often the case for rare conditions. Batten disease affects only 2 to 4 out of every 100,000 people born in the US, according to CNN. And only two other families in the nation have faced the exact condition with which the Grays' daughters were diagnosed.
Even if the family is successful in finding a treatment with potential, it could take between one and five years just to begin clinical trials. The Grays are planning to use the money they raise to help other families facing similar conditions. Uncommon diseases need all the support they can get, the Grays said.
"Because this disease is so rare, there's no one funding this research to find a cure," Gordon Gray explained to Newsweek. "It's really become Kris and my job to fund, find and accelerate a cure for our daughters. That's what we're working on day and night."
