Four-year-old Charlotte and two-year-old Gwenyth look like healthy, normal little girls. And they are, for now. But the Gray sisters both have Batten Disease, meaning their life expectancy is only six to twelve years old.
They’re the daughters of film producer Gordon Gray, each diagnosed with a neurodegenerative disease that’s both fast and fatal. While the first few years of life are normal, the inability of cells to balance the build up of proteins and lipids leads to symptoms like seizures, blindness, dementia and loss of motor and communication skills as early as age two. Charlotte was diagnosed in March when she began to have trouble with words. They tested Gwenyth as well, and found she also has Batten.
“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,” mom Kristen Gray says.
Now, the Miracle producer is calling out to his celebrity colleagues for a miracle of his own. And they’ve stepped up.
By spreading the word, celebrities are helping the Grays raise $10 million for research. The couple set up the Charlotte & Gwyneth Gray Foundationwhen they realized the rarity of the disease — affecting no more than 4 in 100 children — lead to very little research. They’ve found a doctor in New Zealand who has successfully treated animals with Batten, and won’t give up hope that their daughters will be cured next.
“I’m never going to give up hope or give up fighting,” Gordon says. “I have to believe that I’m going to save my girls.”
Navigate forward to interact with the calendar and select a date. Press the question mark key to get the keyboard shortcuts for changing dates.