These two young sisters are sick, and Hollywood is pitching in to help
Film producer Gordon Gray and his wife Kristen recently received some devastating news. Their two daughters—4-year-old Charlotte and 2-year-old Gwenyth—were both diagnosed with Batten Disease, a fatal neurodegenerative disease. But instead of being paralyzed by the news, the Grays are fighting back, teaming up with some of Hollywood’s biggest stars (like Channing Tatum, January Jones, and Dwayne “The Rock” Johnson) to try and raise money to fund research into a possible treatment that could save not only their girls, but other children facing the same unimaginable fate.
Batten Disease is a rare and incurable disorder that strikes young children. The Grays became aware of a possible problem when Charlotte began struggling with forming words and the general skills her peers were mastering. They took her in to be tested, and the results came back positive for Batten. Due to the 25% likelihood that their younger daughter had it as well, they took Gwenyth to be tested and learned shortly thereafter that she also had the disorder.
As a neurogenerative disease, Batten first impairs motor skills and eyesight. But soon after children lose mobility and the ability to feed themselves. Most children pass away between the ages of 6 and 12, with severe loss of quality of life beforehand. It’s a horrific disease, but one that lacks substantial research due to the low number of cases. According to Deadline, as few as ten cases exist in the world at any given time.
But the Grays are not giving up hope for their children. They’ve set up The Charlotte and Gwenyth Gray Foundation, and have launched a campaign to try to raise $10 million to fund Batten research. A doctor in New Zealand has had some success that looks hopeful, and the Grays hope to provide the funding necessary to take that research to the next level.
To do so, they have been joined by a whole slate of celebrities, with more expected to join in the call for donations. Given the significant social media following of everyone who has lent their names to the campaign, the chances of reaching the $10 million goal are actually pretty high. The list includes Rihanna, Dwayne Johnson, Megan Fox, Mark Wahlberg, Channing Tatum, Jenna Dewan Tatum, Seth MacFarlane, Jennifer Garner, Jon Hamm, Jessica Alba, Eva Longoria, Jessica Biel, Ali Larter, Darius Rucker, the musician Juanes, Walking Dead star Norman Reedus, Julianne Hough, Brooke Burke, Molly Sims, U.S. women’s soccer star Alex Morgan, basketball player Jason Collins, and NFL quarterback Andrew Luck.
In the video below, the Grays explain their situation. Be warned, the video is heartbreaking. But their devotion and dedication to finding a treatment for this awful disorder is incredibly inspiring. “I’m never going to give up hope or give up fighting,” Gordon Gray says in the video. “I have to believe I can save my girls.”
To learn more about The Charlotte and Gwenyth Gray Foundation, visit the website here.