Legacy lives after Gilbert toddler loses fight with debilitating disease - East Valley Tribune: Health

Legacy lives after Gilbert toddler loses fight with debilitating disease

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Posted: Wednesday, April 25, 2012 8:21 am | Updated: 6:51 pm, Tue Feb 5, 2013.

What’s the impact that one life can make?

“You hear people talk about how proud they are that their kid got into an Ivy League school, but Broxton didn’t have to get into an Ivy to make us proud,” said Kody Taylor, father of Gilbert toddler Broxton Taylor. “He changed more people in two years than we can even know.”

Broxton, 2, died peacefully Friday surrounded by his family. He battled Batten disease for a year.

He reminded people to live in the moment and to celebrate time with loved ones, his parents said.

“It was short, but (his life) encompassed a lot,” said Kristi Taylor, Broxton’s mother.

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 every 100,000 develop Batten disease, according to the National Institute of Neurological Disorders and Stroke.

Broxton was diagnosed June 23 after his doctor noticed he has stalled making his developmental milestones last year in early April.

A 5K fundraiser in February was arranged by a group of neighbors to help cover the costs of Broxton’s care and to make a donation to the Batten Disease Support and Research Association in his name.

But the support wasn’t from just family and close friends, the Taylors said.

“We were amazed by the support,” Kristi Taylor said. “It was so much more than we anticipated.”

About 550 people registered for the run and 10 percent of the proceeds went to the BDSRA, Kristi said.

“People heard about it through friends and friends of friends,” she said about the run. “They’ve left us so many emails on our CaringBridge site.”

It was through Broxton’s CaringBridge site, a non-profit website for connecting families during health crises, that many family and friends kept up with his ups and downs.

“But that’s what we hope people can learn from this—don’t sweat the small stuff,” Kody said. “Those sorts of things don’t matter.”

One person wrote the Taylors saying she had spent the night in her child’s bed, just hoping to stay close, Kristi said.

“Don’t take anything for granted — it’s so cliché, but it’s so true,” she said. “Know what’s important. I heard a quote in the last few weeks, ‘Cherish the small moments because a few years from now, they’ll be the big moments.’”

For the last two weeks, the Taylors and their family have been doing just that.

Both Kody and Kristi took time off work and pulled their 4-year-old son, Brody, out of pre-school. Easter was celebrated with both of their extended families at their house — aunts and uncles, cousins and grandparents taking turns holding Broxton.

Broxton spent much of the last two weeks on the ottoman in the middle of the Taylor living room because that is where he was most comfortable, his mother said. The family slept on the floor and the couch around him, keeping him company the whole time.

“We are extremely blessed to have had that time with him,” Kristi said.

But watching his health deteriorate was extremely hard on the parents in particular.

“It totally changes you,” Kristi said about losing a child. “It definitely brought us closer as a family, as a married couple.”

“Everything along the way has made us stronger,” Kody continued. “Brody will grow up and see that love and be better because of it.”

While it hasn’t been easy, the Taylors have tried to answer Brody’s questions as completely as possible, they said.

“I’ve never seen a bond between brothers like that,” Kody said about the relationship between his two sons. “Even when Broxton was a baby, he wanted Broxton with him all the time.”

Although Broxton never threw a ball or scored a goal, Brody still made sure he played sports in the backyard, Kody said.

“He always wanted Broxton to be the goalie or catcher, so I would set him up in his chair in front of the goal,” Kody said, smiling at the memory. “Then I would make sure to keep the puck from hitting him and make sure that Brody’s stick didn’t hit him.”

“Anytime we saw him smile, those moments wiped clean any of the bad ones,” Kody said.

To make sure that Broxton’s legacy lives on and continues to impact the future, the Taylors donated his brain, spinal fluid and blood samples to BDSRA to further research on Batten.

“No one should have to go through this,” Kristi said. “I don’t think I could go through this again.”

While an extremely rare disease, any children the Taylors have would also inherit a one-in-four chance of the disease. Members of their family could also potentially be carriers of the gene, but both said neither had a family history of Batten before Broxton was diagnosed.

A funeral service will be held at 10 a.m. Friday at the Cornerstone Christian Church, located at 1595 S. Alma School Road, Chandler. In lieu of flowers, the Taylors ask that donations in the name of Broxton be made to the Batten Disease Support & Research Association. Donations can be made at bdsra.org or by calling (800) 448-4570.

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