CORINTH — A local photographer and a family shattered by illness crossed paths Saturday to create lasting memories of 4-year-old Kaitlin Bowman.
Photographer Tracey Buyce selected the Bowman family — Kaitlin and her parents, Becky and Jason — as winners of her version of a national photography contest called “Giving Is Awesome.”
Buyce chose the Bowmans from a group of nominated local people who could not afford professional photography. She donated a two-hour photo session and hundreds of dollars’ worth of photos, an album and a DVD of images to the Bowmans.
“I am truly honored to photograph Becky and Kaitlin. It’s difficult to put into words the empathy I feel for this family,” Buyce said.
Becky and Jason received life-altering news at the end of April when Kaitlin was diagnosed with an incredibly rare degenerative disease — neuronal ceroid lipofuscinosis, also known as Batten Disease.
Since that diagnosis, they have struggled to understand Kaitlin’s condition and what they can do to help her.
“It’s really hard for us to even understand,” Becky said. “We’ve just been trying to figure out a way to help her.”
The diagnosis came after doctors spent nearly a year trying to find the cause of Kaitlin’s seizures. When a doctor began genetic testing, he informed the Bowmans that NCL was a possibility, but only a remote one.
Kaitlin is one of only about 300 people in the country with NCL, and there is no known treatment. Becky said her speech has begun to deteriorate and she is afraid of what may await her daughter — blindness, loss of motor control and mental function are all reported. The disease is fatal.
NCL is something that “happens to almost nobody, but could happen to anybody,” Becky said.
She said they are still struggling to come to terms with the diagnosis and its ramifications while searching for any treatments that may help their daughter.
“We cry and then go back online,” she said. They are hoping Kaitlin will be accepted into a promising clinical trial in Portland, Ore.
They are also grappling with the sheer improbability that they each carried the rare recessive gene and passed it along to their daughter.
“Two people from opposite sides of the country get married and have this child and she gets it,” Becky said. “It’s like something you read about. It’s not something that actually happens to your kid.”
Becky said the photos from Saturday’s shoot are a luxury the family cannot afford while they scrimp and save for Kaitlin’s medical treatments.
“We’ll always have these; hopefully, we’ll always have her, too,” Becky said.
Copyright 2009 The Saratogian