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)
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.
“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).
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.
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