#CureBatten: Hollywood Producer’s Campaign To Save His Two Daughters’ Lives From Rare Brain Disorder


Hollywood producer Gordon Gray is best known for his work on sports films such as Miracle and The Rookie. However, Gray is now facing a personal struggle that has left him on a deadline like never before. Gray is the father to two beautiful daughters, 4-year-old Charlotte and 20-month-old Gwenyth. In March of this year, the family found out that both of their daughters suffered from an incredibly rare and potentially fatal degenerative brain disorder called Batten disease. The disease is so rare that typically only ten people on Earth suffer from the disease at any given point. Right now, Gordon and his wife are caring for two of the ten. Instead of sitting by and waiting for the disease to claim the lives of his daughters, Gray is on the hunt for a cure.

Gordon Gray had no idea that there was anything wrong with his seemingly healthy daughter, Charlotte, until she was 3-years-old. Charlotte’s speech seemed to hit a stopping point and she began to struggle to keep up with other kids her age. Her fine motor skills were also noticeably off. After speech and occupational therapy, things seemed to improve. However, the child was still not progressing and struggled continually with these two areas.

“Charlotte had hit a plateau and we did not understand why.”

After months of seeing doctors and a diagnosis of mild autism, the family hit a turning point when Charlotte tripped over a Christmas package. As the preschooler stood up, her arm began to shake. The family knew there was more to Charlotte’s struggles, and took her for an MRI. The diagnosis was devastating. Their beautiful 4-year-old daughter had Late Infantile-NCL Batten Disease CLN6, an incredibly rare disease that doctors said was fatal. The doctors explained that those suffering from the disease end up blind, immobile, cognitively impaired, and eventually dead, between the ages of 6 and 12.

“He told us, ‘Your daughter has Batten disease, it’s incredibly rare, it is fatal. And there is no cure. They’d found another person afflicted by this variation of the disease in India, so the diagnosis was confirmed. I asked if there was anything else he wanted to say to me, and he handed me some brochures.”

According to the foundation website, after Charlotte’s diagnosis, the family decided to go ahead and have their 20-month-old daughter Gwenyth tested, as genetic diseases have a 25 percent chance of showing up in siblings. The results were horrifying. Both of their daughters suffered from the debilitating and deadly disease, and there was no cure. That is when the Gray family set up the Charlotte and Gwenyth Gray Foundation in an attempt to expedite a cure for the deadly Batten disease. The foundation is hoping to raise $10-$12 million in the coming months to spearhead much-needed research. With so few children suffering from the disease, little money is put into research for a cure. However, the Gray family is hoping to change that.

Gray Foundation from Anaconda Street Productions on Vimeo.

Deadline reports that the condition is so rare that the Gray family had nowhere to turn in California, as there were no Batten specialists in the area. After heavy research and tapping into all of their contacts, the family was led to a scientist in New Zealand who had been working on a cure for a disease similar to Batten disease. The scientists had been able to cure one in six sheep of the disease, but needed greater efficiency to move on to human trials. With funding tight, the scientist said it would take two to three years to get close to those efficiency rates. However, Gray didn’t have that much time, so he asked if money could speed up the process. The scientist said yes, and the family began their campaign to raise funds for the trials.

Though it is a long-shot, Gordon Gray says that he is not going to give up and that if he can move quickly enough, it might just be enough to save his little girls’ lives.

“When I explain to people, I talk about Doug Flutie and Boston College and that Hail Mary pass in the Cotton Bowl. What I’m trying to buy right now is three Hail Mary passes before I run out of time. I don’t think I will, because I have a doctor who thinks we can move quickly enough to save my girls. And if we save the girls, and I don’t want to sound reckless, but we’ve potentially cured this disease.”

[Image Credit: Charlotte and Gwenyth Gray Foundation]

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