Film producer Gordon Gray and his wife Kristen have recently launched a foundation to combat Batten disease, a genetically inherited degenerative disorder that is affecting both of his young daughters.
Celebrities such as Gwyneth Paltrow, Channing Tatum and Rihanna have vocalized their support of the foundation over social media.
Kristen and Gordon, who has produced movies including "The Rookie" and "Million Dollar Arm," first noticed that something wasn't right in 2013, when elder daughter Charlotte, who's now 4-1/2, began speaking sentences with fewer and fewer words.
Charlotte went "from eight-word sentences to five-word sentences to mixing up words," Kristen says, according to People magazine.
The Grays took Charlotte to speech therapy, but she wasn't getting any better. Later that year, she began having muscle tremors as well.
After multiple tests and false diagnoses, Gordon and Kristen received a phone call from their doctor to come in to find out the results from a new DNA test.
"At that point I sort of knew that the results wouldn't be good, just knowing that they wouldn't tell us anything on the phone," Gordon tells People.
The diagnosis was "a form of Batten disease called Late Infantile-NCL Batten Disease CLN6," according to the magazine.
Doctors then told Gordon and Kristen that the disesase is "'rare, there is no cure and it's fatal,' " Gordon tells People.
Their next challenge was getting their younger daughter, Gwenyth, tested. At 20 months, she was also diagnosed with having the same genetic mutation as her sister.
The effects of the disease, which include blindness, seizures and dementia, are heartbreaking.
Not only that, but children diagnosed with Late Infantile-NCL Batten Disease CLN6, as the Gray kids have been, have life expectancies of between 6 and 12 years, according to the foundation's website.
As of Friday, the family has raised $400,000, according to Newsweek. Donations are being accepted on the site via PayPal.
Image via The Charlotte and Gwenyth Gray Foundation