Irvine Couple Lose Son to Rare Neurodegenerative Disorder, Hope to Save Second Son

An Irvine couple who recently lost their 6-year-old son to a rare neurodegenerative disorder is now hoping to save their second son who has the same condition.

Danny Bowman, left, and his son Ely play in their yard on Sept. 23, 2016. (Credit: KTLA)

Danny Bowman, left, and his son Ely play in their yard on Sept. 23, 2016. (Credit: KTLA)

Titus Bowman lost his ability to walk and see due to Batten disease. The 6-year-old died on Sept 17.

"His smile was so big, like, his mouth was just huge," Titus' mother, Bekah Bowman said.  "It was just all this happiness, kind of bubbling out of him."

While the family is grieving, they are hopeful Titus' journey will help his little brother, Ely, survive.

"Because of Titus, we can be more proactive for Ely," Bowman said.

A program in Ohio offers treatment that could help stop the disease's progression.  But the back and forth trips will get costly.

That's why a friend of the Bowmans from their church is putting on a charity bike ride from Irvine to Montana to raise money for the costs of the treatments. 

“I would love to have him by my side still, but he left such a legacy that I hope we can carry on and keep making that kind of difference," Bowman said.