Parents Losing Both Sons to Rare Brain Disease

Batten disease, a rare and fatal genetic brain disease marked by blindness, seizures, dementia, and loss of motor skills, gained attention earlier this year when Hollywood producer Gordon Gray and his wife Kristen learned that both their young daughters have it, reported Deadline in June. Now another California couple, Bekah and Danny Bowman of Orange County, have learned that not just their 5-year-old son Titus but also their 2-year-old son Ely have the disease, reports People. "The amount of publicity from the Grays has been a silver lining in the midst of tragedy," says Bekah, noting that they decided to share their story after watching the Grays, who are trying to raise $10 million to $12 million in a race to help find a cure, go public with their own struggle.

Worries about speech and mobility issues and seizures led to Titus' diagnosis in April. Because the disease is genetic, there was a 25% chance his little brother would have it. Ely took a test in June, and the family's worst fears were confirmed. Both boys have late-infantile CLN2 and will face dramatic declines before dying young. Titus is already suffering the effects. "When we got the diagnosis, [Titus] was still talking, walking and eating," Bekah says. "Within a month ... he lost all of those abilities. He's blind, he cannot walk anymore, he's in a wheelchair, he's eating through a GJ tube and he doesn't talk anymore." Still, the Bowmans are finding a way to be thankful for every day they have with their boys. Bekah had this to say in an April blog post: "This week I’ve become broken. More broken than I knew I could be. So broken that I can’t fix it and I’m overcome by it. But ... out of the broken comes love. An authentic, new eye-opening kind of love." A GoFundMe campaign has been started for the family. (This rare disease could turn this boy into a mannequin.)