This past April he was diagnosed with a rare genetic disease called late infantile NCL, also referred to as Batten disease.Danny and Bekah discovered that they both carried the recessive gene for this disease and that their younger son Ely had a 25% of having Batten disease as well. Then a devastating diagnosis changed everything.This spring, both the couple's sons were diagnosed with late infantile-NCL, a form of Batten disease – an extremely rare and fatal neurodegenerative disorder for which there is no cure.Children with the Bowman's form of Batten disease, Late Infantile CLN2, face a dramatic decline followed by an early death.The process of succumbing to Batten includes blindness, seizures, personality and behavioral changes, dementia, the loss of motor skills and the ability to communicate, according to the Batten Disease Support and Research Association The disease has already taken hold of Titus and a genetic test has confirmed Ely will face the same fate. "When you are living in the midst of Batten disease with your child it takes over all things normal, but even in the face of that, they have appeared, to me, relentless to raise funds and find a cure. We sought out every therapy and assessment we were told or felt he needed and diligently got him on an IEP, all with promises that this was just a difficult season and we would see improvement with time.
– 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.)