When the news came that Hollywood producer Gordon Gray’s 4½-year-old daughter Charlotte had a fatal genetic illness, he and his wife Kristen immediately asked for a blood test for his 2-year-old, Gwenyth.
Within a week, the younger Gray would also test positive for Batten disease.
Late Infantile NCL Batten Disease CLN6 is degenerative, deadly, and exceedingly rare. It is also swift -- it affects eyesight and motor skills, leaving patients bedridden before they pass away. Life expectancy for kids with Batten is about 6 to 12 years.
Kristen Gray explains in the above fundraising video that Charlotte's quality of life is already starting to suffer. Gwen's is expected to follow.
Gordon Gray, whose film credits include Miracle and Invincible, told Deadline that the only thing he could do to keep from losing his mind was to keep "moving and digging and fighting." The California father scoured the globe in search of hope.
He found it in the form of a New Zealand researcher who had successfully cured a similar disease in sheep, but lacked funding to move into human trials. With time running short, the Grays now hope to raise the money themselves.
Friends and colleagues have rallied around the Grays, organizing a massive fundraiser aimed at raising a minimum of $10 million dollars.
Celebrities ranging from Rihanna to Seth MacFarlane have agreed to share the Grays' moving video via social media, asking their followers to each donate $1 to help get the research moving to give Charlotte and Gwenyth a fighting chance.
This is heartbreaking: http://t.co/o9xtE7hENC. Let's help. 🙏 Donate: http://t.co/hbyiJg7dxh #CharlotteandGwenyth
I support @curebatten because every $ we raise helps more children live. Donate here: http://t.co/MVyNcL9I6m. https://t.co/KPbMHzlzeF
By Thursday afternoon, the Grays had raised $356,000 towards their $10 million dollar goal.
"I have a doctor who thinks we can move quickly enough to save my girls," Gray told Deadline. "And if we save the girls, and I don’t want to sound reckless, but we’ve potentially cured this disease."
For more information about the Charlotte and Gwenyth Gray Foundation, and what their parents are hoping to accomplish, visit their website.