What would you do if you found out your vibrant, playful daughter had a rare brain disease that was both debilitating and without a cure? And then what would you do if you found out your younger daughter shared the same fate?
It's a parent's worst fear realized for Gordon and Kristen Gray. Their young girls, 4-year-old Charlotte and 20-month-old Gwenyth, both have Batten disease, a rare and fatal neurodegenerative disease. They first received Charlotte's diagnosis in March, after she started showing odd symptoms, and because there was a 25 percent chance Gwenyth could carry it, they had her promptly tested only to discover she too had the disease.
Although kids with Batten live their first few years as healthy as any other child, the symptoms — including epileptic seizures, blindness, dementia, and the progressive, complete loss of motor skills — come on quickly, according to the Batten Disease Support and Research Association [1]. There is no treatment, and the prognosis is grim: the average age of death is between 6 and 12 years old.
"You're looking at your very healthy vibrant children who are loving life right now, who could potentially lose all of that joy in a very short time," Kristen said through tears.
Because Batten is so rare — no more than four out of every 100,000 children are diagnosed — there has been little research done since its discovery in the early 1900s. The Grays are hoping to change that.
After locating a doctor in New Zealand who's found success treating animals with the disease, they've formed The Charlotte and Gwenyth Gray Foundation [2] and have a lofty goal — to raise the $10 million they are told is necessary to fund the urgent medical research they hope will bring a cure before it's too late for their two daughters.
Gordon, a Hollywood producer, has even solicited the help of his famous colleagues. Everyone from Jessica Alba and Jennifer Garner to Channing Tatum and Mark Wahlberg [3] have passed along his Facebook fundraising efforts.
"I'm never going to give up hope or give up fighting," Gordon said. "I have to believe that I'm going to save my girls."