For Bekah and Danny Bowman of Orange County, California, summers used to be consumed with trying to keep up with their energetic sons Titus, 5, and Ely, 2, on the beach, at the park and on family vacations. 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. Now, the young parents are finding things to be grateful for every day, even as they watch their sons fade away.
The Bowman’s children were diagnosed with the deadly disease around the same time that Hollywood producer Gordon Gray and his wife Kristen received the diagnosis for their daughters Charlotte, 4, and Gwenyth, 2.
In June, the Grays enlisted help from the Hollywood community to spread awareness and founded the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease in the hopes of raising the $10-12 million needed to fund research for a cure.
“Because of the rarity of this disease it doesn’t get a lot of attention,” Gordon told PEOPLE in June. “And because it doesn’t get a lot of attention most of these doctors don’t get a lot of funding. We made it our goal – ‘Well, you guys do the research, we’ll get the funding.’ ”
Their efforts have given the Bowmans hope.
“The amount of publicity from the Grays has been a silver lining in the midst of tragedy,” says Bekah, whose says the family was inspired to share their story after the Grays went public with theirs.
“I admire the Grays for all their hard work,” says Bekah. “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.”
A medical mystery
When the couple began to notice their chatty son Titus’s speech was lagging at around two years old, doctors told them to wait it out. Next, they noticed he was becoming clumsy.
Then, in February of 2014, Titus began having seizures and was diagnosed with epilepsy – but that didn’t account for all of his symptoms. When the young parents took their son to a psychologist, they were told he was likely intellectually disabled.
“We just felt so off about that,” Bekah Bowman tells PEOPLE. “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.”
On April 7, all of the pieces came together – he was diagnosed with fatal and incurable Batten disease – beyond anything either parent could ever have imagined.
A rapid decline
Shortly after Bekah and Danny learned the name for what had been plaguing their son for years, they witnessed a rapid and unstoppable decline.
“When we got the diagnosis, [Titus] was still talking, walking and eating,” Bekah tells PEOPLE. “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.”
Titus’s form of Batten disease isn’t just rapidly progressing, it’s life-limiting. Children with this variation of the disorder face a life expectancy of 6 to 12 years.
As Bekah and husband Danny put all of their energy into helping their older son enjoy his remaining days, a grim possibility loomed. Because Batten disease is an inherited genetic disorder, the fact that Titus had it meant there was a 25% chance Ely would as well.
A Second Diagnosis
After having their younger son Ely tested in June, the Bowmans received the devastating news that he faced the same tragic fate as his brother.
“It was unbelievable,” Bekah says. “My first thought was no, that can’t be right. Re-test him, that can’t be right.”
“It was just a shock obviously, because we thought he was fine,” Danny adds. “I mean you don’t think both of your kids are going to end up with the same syndrome.”
For now, as the parents try to help Titus through a daily struggle, they try not to think about what lies ahead.
“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,” Bekah says.
A commitment to life
The couple remains focused on helping their sons enjoy their lives as much as possible, as well as trying to feel thankful for every moment they have.
“When I’m willing to say, ‘Thank you for…’ suddenly I see the ugly become beautiful and I can make it another day,” Bekah says.
“I couldn’t have asked for a more loving, supportive, self-sacrificing family than ours to journey this with,” Bekah adds. “I’m so thankful for this time they all have with our boys. These memories are precious.”
Even as they focus on creating new memories, the old ones of the boy they lost are difficult to escape.
“I think this is one of the areas that brings us the most pain when it comes to Batten Disease and what it’s taken away from us,” Bekah says.
“Living life next to Titus on a daily basis, listening to his belly laugh, watching the bundle of energy plow through the house (and through his brother), around the park, crash through the waves at the beach – it brought so much happiness. I miss that with all my heart and knowing Ely will follow in this … It hurts.”