Kaitlin Bowman was a beautiful, healthy baby girl. She was cheerful and sweet. Now she's 5 and still all those things, except she can no longer talk, stand or sit on her own or feed herself.
She was a normal, healthy baby; nothing wrong, not even an ear ache, said Becky Bowman, Kaitlin's mother.
That is, until shortly after Kaitlin's third birthday in 2008, when she dropped suddenly to the floor one day and suffered a grand mal seizure. Doctors at the hospital told Bowman kids could have seizures up until age 5 and not to worry, there was nothing crazy going on; it was normal.
But over the next couple months, Bowman started noticing little things about her daughter that didn't seem so normal.
"She started falling down a lot but I thought maybe she was just getting clumsy," said Bowman.
Turns out, it wasn't a klutzy toddler finding her big girl legs, but rather myoclonic epilepsy, a rare form. Testing to find a cause for the epilepsy dealt the Bowman's a devastating blow the young family from Corinth never suspected.
In April 2009, Kaitlin was diagnosed with Batten disease, late infantile; a progressive, neurodegenerative disease.
"I don't remember anything from that doctor appointment except she told me Kaitlin won't live past 10 and there's nothing I can do," said Bowman. "Kaitlin was climbing all over me, wiping my tears and saying 'I OK mom.'"
The diagnosis was blindsiding, not only because there were relatively few warning signs, but because there is no known cure or treatment. In fact, there are only about 450 people diagnosed with the disease in the U.S. and just two clinical trials in the country.
Bowman was at a loss. She didn't know what was up or what was down but she knew she had to do something to give Kaitlin the best shot at beating the odds. Coming Together For Kaitlin was formed, a registered non-profit that divides funds between research efforts and equipment to help Kaitlin live and function.