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O.C. Family Committed To Finding Beauty In Each Day After Sons Are Diagnosed With Rare, Fatal Disease

IRVINE (CBSLA.com) — An Orange County couple is dealing with a rare and fatal disease that has struck their two sons.

"He was perfect. He was so handsome. He was a legitimately cute baby," said Bekah Bowman, referring to her son, Titus.

It wasn't until Titus was a toddler that his parents noticed there was something wrong with their seemingly perfect little boy.

"At about 3, he stopped gaining skills," Bowman said. He then had a seizure at preschool.

"Within two weeks, he had 6 or 7 more and we finally got into a neurologist and he got diagnosed with epilepsy," she said.

The Bowmans thought it was as bad as it was going to get, but they were wrong.

"I think the first like two weeks, I just cried all the time," she said. "I wasn't sure how I was going to enjoy the moments because even the happy ones, you're just thinking, 'How much longer am I going to have this?' " she said.

Titus was diagnosed with a rare and fatal neuro-degenerative disorder called Batten disease. Children with it typically die between the age of 6 and 12.

"There's no cure. There's no known treatment to help. We're basically told, 'Enjoy your time with him,' " she said.

Titus within a month had lost his ability to eat, walk, speak and see.

Batten is genetic. The Bowmans were told there is a 25-percent chance their younger son, 2-year-old Ely, would also have the disease.

Then, two months after Titus was diagnosed, their worst fears were realized.

"I walked out the front door. I didn't know what to say to anybody. I collapsed on the sidewalk and just started crying," Bowman said.

Many people had never heard about Batten disease until last month when high-profile Hollywood producer Gordon Gray enlisted celebrities with the goal of raising $10 million to find a cure.

Both 4-year-old Charlotte and 21-month-old Gwenyth Gray have the deadly disease.

"I absolutely hate that they had to hear that, but I am so grateful that they are using it in this way," Bowman said.

Until there is a cure or until they lose their beloved boys, the Bowmans are committed to finding beauty in each day.

"We laugh more now than we ever have and I just feel like, 'Yes, we have this disease and yes, God didn't choose to protect our boys from it,' but He's giving us these moments that are just beautiful and just getting these glimpses into what it means to really live," Bowman said.

Insurance currently does not cover the boys' formula, which runs about $1,000 a month. An online fundraising page has been set up by the family to help offset their medical costs. For more information, click here.

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