Hollywood Producer's Fight to Save Daughters From Incurable Brain Disease


Movie exec Gordon Gray is rallying celebrity friends to help him raise the $10 million needed to fund research for a cure for the deadly Batten Disease that threatens the lives of his daughters, ages 4 and 2. (Photo: the Charlotte & Gwenyth Gray Foundation)

Like the real-life stars in his nail-biting, come-from-behind-and-win films Invincible and Miracle, movie producer Gordon Gray is in the fight of his life — for the survival of his two young daughters.

Less than four months ago, he and his wife, Kristen, learned that their 4-year-old, Charlotte, has a rare neurodegenerative brain condition Batten Disease, which carries a life expectancy of just a few years. Shortly after the preschooler’s diagnosis, the family had their other daughter, Gwenyth, 20 months, tested for it and discovered she is afflicted as well.

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“The geneticist told us there was limited data out there but that this…would leave our daughter blind, immobile, cognitively impaired, and eventually dead between the ages of 6 and 12,” Kristen writes in a blog on the Charlotte & Gwenyth Gray Foundation website, which they started to raise funds for a cure, about that first diagnosis. “Our world was shattered.” (The Grays were not available to comment to Yahoo Parenting).


Charlotte Gray (Photo: The Charlotte & Gwenyth Gray Foundation).

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Gordon immediately jumped into action. “I felt like if I kept moving and digging and fighting, I wouldn’t lose my mind,” the father told Deadline of his search for someone, anyone, who could help him treat the little-known — and even less-research-funded — disease. Connections led him to a researcher in New Zealand attempting to develop human trials for a possible treatment.


Gwenyth Gray (Photo: The Charlotte & Gwenyth Gray Foundation).

“I asked, ‘What can we do to give my daughters a shot?’ and he said he was two to three years away at best and what I needed to do is prepare my house for wheelchairs and blindness,” Gordon revealed. “He said, ‘I have something here that I believe will be a cure, but there’s no funding for it right now. Nothing. You would have to personally fund the research, the trials, everything, including the surgery.’ I said, ‘OK.’”

Now the family is fundraising to accelerate research on three possible treatments: gene therapy (that Deadline reports was “successfully tested on one animal model”), stem-cell therapy, and small-molecule therapy. The price tag, however, is steep at $10  to $12 million. So Gordon is using all of his resources, including his celebrity friends to spread the word that his family needs help.

An impressive lineup of stars — including Julianne Moore, Alyssa Milano, Amanda Seyfried, Gwyneth Palrow, Channing Tatum, Jessica Alba, Kate Walsh and Jennifer Garner — have risen to the occasion and asked their millions of followers on social media to donate just $1 each for the cause today on Facebook and Twitter via #CureBatten.

“We have a very short window to try and save them,” Kristen implored in a video that the family has shared on the The Charlotte & Gwenyth Gray Foundation website.

So far, the mom blogs that the girls are strong. “While Charlotte isn’t where she should be at her age, she is still walking, talking and smiling,” Kristen writes. “Gwen is almost two and at this time asymptomatic. She loves her big sister and enjoys many of the same activities that Charlotte does.”

But the couple can’t ignore the ticking on the clock for their cure. “When I explain to people, I talk about Doug Flutie and Boston College and that Hail Mary pass in the Cotton Bowl,” Gordon told Deadline. “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.”

You can donate to help the Grays save their girls through The Charlotte & Gwenyth Gray Foundation.

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