Coming together for Kaitlin

"We raise funds to support her and the equipment she needs; adaptive devices that help her communicate and a walker or wheelchair," said Bowman. "There's a mother organization, BDSRA [Batten Disease Support and Research Association] and what they do is kind of get everyone together because we're spread out."

With so few diagnosed cases, Batten disease is considered an orphan disease, meaning it's not profitable for companies to conduct research on, said Bowman. Families like the Bowman's pool the money they raise and put it toward one clinical trial at Cornell and another in Oregon.

"You need money to help with what you need at home but at the same time you need to look at the big picture and research is what we need. We need to find a cure, it's got to be out there," said Bowman. "It's so simple. It's just an enzyme she doesn't have."

Kaitlin was actually the first child scheduled to be evaluated by both clinical trials. Just 15 days before her surgery, another disappointment.

"When she was turned down from both the trials it was horrible. They called and said 'sorry, we looked over her again and she's deteriorated too much in the past five months,' so she was disqualified and excluded," said Bowman. "It was so close."

Bowman said she notices changes in Kaitlin every day. She can now only say "yeah" or "mama" and needs help with just about everything. But despite her diminishing functions, her spirit is still stronger than ever.

"She's happy and laughs all the time. She loves being read to, she loves My Little Pony, horses and coloring," said Bowman. "She's really funny and will make little jokes; they're in her head but you know when she is because all of a sudden she'll just start laughing. That's the best, hearing that belly laugh when she thinks something is funny."

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