Irvine family who lost son to Batten disease find hope for sibling at Children's Hospital of Orange County

ORANGE, Calif. (KABC) -- It's been a long journey to the hospital room at Children's Hospital of Orange County for the Bowman family.

Their 4-year-old son, Ely, is battling a rare neurodegenerative disorder called Batten disease. It's progressive and fatal.

The disease causes loss of speech and motor skills and seizures.

"(We were) in kind of survivor mode, initially, because there's so much you're trying to absorb emotionally, physically," said Bekah Bowman, Ely's mother.

Last September, the Bowman's older son Titus died from the disease.

Ten days later, the family was in Ohio for a clinical trial in hopes of slowing the disease's progress in Ely. Doctors caught it early because of his brother.

"He changed our lives, he changed Ely's life. He was the pioneer that pushed through all this stuff," said Danny Bowman, Ely's father.

After six months of flying to Ohio every two weeks, the Irvine family is now home at CHOC.

It is the only hospital on the West Coast to offer the FDA-approved drug Brineura.

"Not only us, but to help other families, too, with that opportunity we were able to open doors for other families," Danny said.

Other Batten families are now receiving treatment at the hospital and finding comfort in each other's stories.

All of this is a product of the Bowman's relentless efforts and a team of doctors and nurses who refused to give up.

"It took a lot of time. It took a lot of soul and effort, but it was really, really worth it," said Dr. Raymond Wang, a metabolic physician at the hospital.

Neurosurgeon Dr. Joffre Olaya, who placed the port in Ely's head where the drug is administered every two weeks, said patients had no hope until this medication.

The drug slows the disease, but does not cure it.

The Bowmans said they're leaning on their faith to take it a day at a time. Another day with Ely is also another day to honor Titus' legacy.

"We've been able to give people hope and help them find joy in their journeys even if doesn't look exactly like ours," Bekah said.
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