(NEW YORK) — Gordon Gray has spent his career producing inspirational movies in Hollywood.
His films include The Rookie and Miracle, but now his family is in need of its own Hollywood ending after Gray’s two young daughters, 4-year-old Charlotte and 2-year-old Gwenyth, were diagnosed with Batten disease.
Batten disease is an extremely rare degenerative brain disorder that “causes rapid deterioration, atrophy, and ultimately death of brain cells,” Gray said.
The girls were diagnosed in March. There is no cure for the fatal disease.
Charlotte already shows signs she’s struggling.
“She has the same heart and she still loves life, but she is having a hard time,” Kristen Gray, the girls’ mother, told ABC News in a telephone interview on Tuesday.
Kristen described Charlotte as “the sweetest, sweetest most loving girl in the world,” and called Gwenyth “feisty” and a “spitfire.”
“We don’t know what tomorrow’s going to look like for Charlotte and Gwenyth,” she said.
According to the National Institute of Neurological Disorders and Stroke, Batten disease is so rare that it affects an estimated two to four out of every 100,000 children in the United States. Fewer than 10 children in the country are currently living with CLN-6, the specific gene mutation that affects Charlotte and Gwenyth.
Gordon Gray and his wife have turned their heartbreak into a call to action, starting the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease. According to its website, the foundation was created to raise the estimated $10 million necessary “to fund the urgent medical research to save the lives of all children devastated by this disease.”
The Grays’ quest led them to researchers in New Zealand.
“We believe we’ve found the scientists and the doctors who can cure our girls,” Gordon said. “The unfortunate problem for us and everyone with Batten’s disease is funding doesn’t exist.”
The Grays have also harnessed the power of celebrities including Channing Tatum, Jennifer Garner and others, all of whom are flooding social media to raise money and awareness.
“It gives us hope that not only are we going to be able to save our daughters but we’re going to be able to save these other children,” Kristen said.
Her husband says they’ll keep fighting every day for a cure.
“We’re never going to give up hope,” he said.
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