Friends and neighbors of a Gilbert toddler with a terminal genetic disease are hosting a 5K and one mile run Feb. 12 to help pay his medical expenses and donate to the Batten Disease Support and Research Foundation.
Batten disease, also know as neuronal ceroid lipofuscinoses (NCI), is a genetic disease that can affect children of varying ages as well as adults. Symptoms eventually include seizures, blindness and regression of skills such as walking, talking, eating and cognitive function. Eventually, people diagnosed with the disease become bedridden and need full-time care.
Only two to four out of 100,000 births develop Batten disease, according to the National Institute of Neurological Disorders and Stroke.
The disease is always fatal.
A rapid decline
Broxton was born Dec. 21, 2009, a healthy, normal little boy and the second son to Kody and Kristi Taylor. At about 1-year-old, Broxton had been walking for two months, began eating baby food and could say both "Dada" and "Mama." While two words is a little behind standard childhood markers, Kody and Kristi weren't too worried.
Shortly after that, his walking changed and he started hyper extending his knees and walking with straight legs, Kody said.
Broxton was first sent to a neurologist, who referred them to an ear, nose and throat specialist, Kristi said.
"We weren't initially that worried," she said. "We thought it was just going to mean a hearing aid."
But things quickly changed from that point on. His hearing was fine, and Broxton was sent to another neurologist.
Broxton became fussy all the time, his father said. He wasn't eating and his two words disappeared. His head hadn't grown since his 12-months check-up, his mother added.
"He was admitted to the hospital since it was such a rapid decline," she said. It was the beginning of May, less than six months since he had a relatively normal check-up.
Over the course of a week, he was submitted to a barrage of medical tests - an MRI, extensive blood work, a spinal tap.
Every test confirmed what Broxton didn't have, giving no answer to what was making him so sick. So the Taylors returned home, hoping that some of the other tests would come back with an answer.
The neurologist was a straight shooter, which was reassuring, the Taylors said. By the time they left the hospital, they knew it was something serious and something rare.
When the Taylors finally got the diagnosis of Batten disease, they also learned that both of them had to be carriers. Every child that Kody and Kristi have together has a one-in-four chance of inheriting both genes and Batten disease.
Broxton's 4-year-old brother, Brody, who appears to be healthy, has a 50 percent chance of being a carrier. After consulting a geneticist, getting Brody genetically tested to determine if he is a carrier is a decision they'll leave for him when he's old enough to make it himself, his parents said.
To never grow up
Family pictures of smiling faces line the walls of the Taylor family's Gilbert living room. Broxton, 2, snuggles into his dad's arms on the couch. His eyes wander the room, but seem to focus in the direction of voices.
"He's a daddy's boy, he's most content when Kody holds him," Kristi said with a smile directed at Broxton. He has begun to have spasms frequently throughout the day. "But when he's in his daddy's lap, he just relaxes, the spasms go away."
A feeding tube leads from his abdomen up to a bag, delivering his breakfast. He sucks on a bottle top - no longer able to swallow, but still finding comfort in the action.
The feeding tube was placed in October, a part of a series of regressions and plateaus, Kristi said. Thankfully he hasn't started having seizures.
"There's not much vision," Kody said.
And the once frequent visits to the doctor have been replaced by a team of hospice workers. Broxton spends most of his day being held, lying on the floor or sitting in his chair with toys that play lullabies. The medication he's on to treat some of his symptoms make him sleep most of the day. He has regressed to the life of an infant.
"The hardest part is slowly watching your kid deteriorate," Kody said.
"A lot of our friends have kids the same age," Kristi said. "It's hard watching kids his age do things he should be doing."
But perhaps the hardest thing for the parents has been trying to explain Broxton's illness to his brother.
"He understands parts of it in the moment," Kristi said, explaining that Brody can tell his classmates why his little brother has a feeding tube, but sometimes turns the question back to his parents at home.
"‘When is Broxton going to grow up?' he'll ask and we have to say, ‘Well, he's not,'" Kristi said.
Run for Broxton
Through the generosity and collaboration of the Taylors' neighbors in the Cooley Station community, there will be a benefit Feb. 12 to help fund Broxton's care and a portion of the funds will go toward a donation to the Batten Disease Support and Research Foundation.
"We want to show them they have support around them," said Jennifer Feirstein, a neighbor and organizer of the event.
The event will consist of both a 5K, beginning at 8 a.m., and a one mile fun run/walk, starting at 8:05 a.m., at the Equestrian Trail at Freestone Park, 1045 E. Juniper Road, Gilbert.
To register, participants can visit www.runforbroxton.com. There is a mail-in form or the website has a connection to the online registration form. The cost is $35 for the 5K and $20 for the fun run. Participants will receive a t-shirt.
"Because it's such a rare condition, the funding is not there," Kody said. "They've hit a lot of roadblocks."
In Arizona, the Taylors have been told that there are only two other children (both with the juvenile form) who have Batten disease. According to what they've been told, Broxton is one of 40 in the country with the infantile form and among only about 400 in the world, they said.
"Jen (Feirstein) had the idea and did all the research," Kristi said, saying her neighbor came to them looking for a way to help. "It's all a part of the community that we find ourselves lucky to be a part of."
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