Sasha Alexander, Angie Harmon and other celebrities put their support behind #CureBatten.
A Hollywood producer’s desperate bid to save his two young daughters from a rare brain disease has taken over Facebook and Twitter as hordes of actors and musicians rush to promote the fundraising campaign.
Gordon Gray – best known for producing inspiring sports films like Miracle, Million Dollar Arm and The Rookie – is currently trying to raise $10million to fund research that could potentially save the lives of his daughters Charlotte, 4, and Gwenyth, 2, who suffer from a fatal disorder called Batten disease.
Amanda Seyfried, Channing Tatum and John Hamm are just a few of the celebrities that have posted about the Charlotte and Gwenyth Gray Foundation today, asking their fans to donate at least $1.
In a video produced to promote the campaign, Gray and his wife Kristen say their daughter Charlotte was a healthy baby and toddler, but that she began to struggle with words and coordination when she as two and a half.
After more than a year of seeing doctors and speech therapists who told them not to worry, the Grays finally knew something was seriously wrong last Christmas when Charlotte tripped over a present and saw her arm shaking when she regained footing.
Charlotte was misdiagnosed with both autism, and a degenerative disease called Leukodystriophy before she underwent gene sequencing in March at UCLA and a geneticist delivered the bad news,.
‘I was there with my wife, and the meeting went something like this,’ Gray told Deadline Hollywood. ‘He told us, “Your daughter has Batten disease, it’s incredibly rare, it is fatal. And there is no cure.” They’d found another person afflicted by this variation of the disease in India, so the diagnosis was confirmed. I asked if there was anything else he wanted to say to me, and he handed me some brochures.’
Following that diagnosis, the Grays decided to get Charlotte checked for the disease and were heartbroken to learn that their 20-month-old girl had it too.
‘You’re looking at your very healthy vibrant children, who are loving life right now and who could potentially lose all that joy in a very short time, so we have a very short window to try and save them,’ Kristen Gray said through tears in the fundraising video.
The disease causes its victims to lose their site first, then their motor skills and finally the ability to feed themselves which proves fatal. Those who have the condition typically die between the ages of 6 and 12.
Batten disease is so rare that it’s estimated only 10 people have it in the world at any one time. Since so few suffer from the disease, research to find a cure has been limited.
However, Gray found a medical research in New Zealand who has had success in animal trials and thinks he could find a cure if able to get the funding to push his research to the next stage.
Hoping they can save their girls through this doctor’s research, the Grays started the foundation for their daughters and tried to spread the word throughout the film industry to draw attention to the campaign.
‘I’m never going to give up hope, or give up fighting. I have to believe that I’m going to save my girls,’ Mr Gray said.
Source Daily Mail
Learn more about how you can help at curebatten.org