Following Brother's Death, Irvine Boy to Receive Treatment for Rare Disease

The disorder killed his older brother; now Ely Bowman is fighting the same battle.

Like many other 3-year-olds, Ely Bowman is rambunctious and likes to play, but Ely is also battling a rare terminal disease that took his brother's life just one week ago.

At five years old, Ely's brother, Titus, was diagnosed with Batten's Disease, a rare nervous system disorder that affects two to four of every 100,000 U.S. births, according to the National Institute of Neurological Disorders and Stroke.

"(Titus) was blind. He couldn't talk anymore, he couldn't walk and he could not feed by mouth anymore," said Bekah Bowman, the boys' mother.

Yet his smile stayed with him until the end. "He smiled. He loved life. He loved people," said Danny Bowman, the boys' father.

Now, the Irvine couple is hoping that a trial treatment can save their younger son's life.

Ely is scheduled to undergo brain surgery next week to replace the enzyme missing in his system that causes the disease.

Friends are cycling across the country to raise the money needed for the family to fly out to Ohio so Ely can receive the treatment. This bike ride, they say, is like Titus' journey: solo and filled with ups and downs.

The Bowmans have thus far raised over $32,000 on their GoFundMe page, Ride for Ely. The goal is $35,000.

Ely has continued to ask his parents to read him a book filled with pictures of his older brother. That's the only time it's clear to him that his brother is gone, they say.

"I would love to have (Titus) by my side," Rebekah said, "but he left such a legacy that I hope I - we - can carry on and keep making a difference."

Contact Us