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.