This couple's 2 sons both have a rare fatal brain disease
This spring, Bekah and Danny Bowman's two sons were both diagnosed with late infantile-NCL, a form of Batten Disease. The rare neurodegenerative disorder is fatal and has no cure.
Titus, 5, and Ely, 2, of Orange County, California both face a dramatic decline in health before an early death. According to the Batten Disease Support and Research Association, the once energetic and healthy young boys will experience blindness, seizures, personality and behavioral changes, dementia, and the loss of motor skills.
The couple began to notice that Titus' speech was lagging when he was 2 years old. In February 2014, Titus was diagnosed with epilepsy after he began having seizures. However, the epilepsy didn't explain all of his symptoms. The couple was told by a psychologist that Titus likely had and intellectual disability. Bekah told PEOPLE:
"We just felt so off about that. It felt so wrong, because we'd see our kid who was very smart and very up-to-speed, with the exception of a little speech delay."
Then, on April 7, Titus was diagnosed with the deadly disease. It was beyond anything the couple had imagined. Bekah told PEOPLE:
"When we got the diagnosis, [Titus] was still talking, walking and eating. Within a month of diagnosis 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. We're just trying to figure out how to communicate with our son."
In June, Ely took a genetic test confirming that he will soon experience the same conditions as his older brother. Danny told PEOPLE:
"It was just a shock obviously, because we thought he was fine. I mean you don't think both of your kids are going to end up with the same syndrome."
The couple is now trying to help their sons without thinking about what's to come. Bekah said:
"Titus has lots of seizures, lots of vomiting, every day we just kind of take the day as whatever we get, we don't think about the next one."
The family wants to focus on creating happy memories for their precious young boys. They feel thankful for all the moments they still have together. Bekah said:
"I couldn't have asked for a more loving, supportive, self-sacrificing family than ours to journey this with. I'm so thankful for this time they all have with our boys. These memories are precious."
In June, the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease was created by Hollywood producer Gordon Gray in the hopes of raising the $10-12 million needed to fund research for a cure.
Watch this video to learn more about Batten Disease:
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