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.
`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.`
Kaitlin is `motivated` and strong and Bowman said that’s what keeps her going.
`She’s my only kid and I get a lot of my strength from her,` said Bowman. `I’m hoping with all my heart she’ll be the first one that outlives this.`
The Bowman’s have found a new normal, she said. Kaitlin is in and out of the hospital every so often with a seizure or respiratory virus. She does aquatic therapy three times a week, which she loves, and also receives speech and physical therapy.
There is one form of stem cell treatment available, said Bowman, but so far it has only produced short term improvements and is all the way in Beijing, costing $32,000 per session and requiring five.
`That’s why we need to concentrate on research to try to find an actual treatment for this, finding the people that want to help, the scientists that want to do the research and companies that will join in,` said Bowman.
Coming Together for Kaitlin holds a benefit at the end of August each year at Eagles Club in Saratoga and hosts smaller fundraisers periodically throughout the year, with the latest being at Pasta Pane when a portion of one evening’s proceeds was donated to the cause.
The organization sells bracelets for $5 and by going to www.humantribeproject.com, people can purchase a $20 tag necklace, with $15 going directly to Coming Together for Kaitlin. Bowman maintains a website at www.comingtogetherforkaitlin.blogspot.com where people can follow her journey or make a donation.