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