Kyle Butt bonds with his dog Ellie. (Owen O'Rourke)
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Swampscott to run Miles for Kyle

SWAMPSCOTT — Kyle Butt, described by his mother as a fun and quirky teenager, has defied all expectations.

Butt, 13, was born with a severe form of pediatric epilepsy where half of his brain didn't develop normally. As a baby, he would seize uncontrollably, with more than 100 spasms a day.

When he was just 23 months old, his parents, Mark and KC Butt, had to make the agonizing decision to allow doctors to perform a surgery that removed 42 percent of his brain in effort to cut down on the frequency of the seizures.

The hope was that the surgery would allow Kyle's good and healthy brain tissue to develop. Adding to the stress was that the surgery, a functional hemispherectomy was performed a lot less frequently then than it is now.

Mark describes the day as one of the longest of their lives. The surgery took 10 hours and was performed by doctors at the Cleveland Clinic.

"It was not a fun decision to remove half of my son's brain," KC said. "He's pretty much defied everybody. He's doing so much better than anybody had ever expected. He has motor issues, but he's doing really well at school."

Since the surgery, Kyle's seizures have lessened dramatically, but in the past year or so, he's started to have more frequent ones than he's had in years. In addition, four years ago, he was diagnosed with Tourette Syndrome, a neurological condition that causes involuntary movements.

Kyle is happy these days. He loves the Boston Red Sox, citing David Ortiz, or "Big Papi," as he calls him, as his all-time favorite player and Mookie Betts as his favorite right now. He got to meet Betts at a Boston Celtics game. He's into a capella music and American Ninja Warrior, and attends the Perkins School for the Blind in Watertown.

He also loves his dog, Ellie, a 2-year-old Australian Labradoodle that the family bought and is in the midst of training to detect and alert his parents to potential seizures at night. Ellie provides additional service to Kyle, who is partially blind in both eyes.

"I feel much more confident and I feel like I can control myself better with Ellie," Kyle said. "I feel like having her around makes me feel more safe."

On Sunday, one of the events he looks forward to all year, and one that bears his name, the 13th annual Miles for Kyle 5K run/1 mile walk, will be at Preston Beach at 10 a.m.

Kyle's aunt started the event as a fundraiser before Kyle's surgery to help raise money for the Butt family. In its first year, the race raised $25,000. After that outpouring of support, the couple decided they wanted to continue the race to help other families.

Over the first 10 years of the race, the family raised more than $100,000 for the Cleveland Clinic's Pediatric Epilepsy Support Group to support ongoing research and assist other families.

For the third year, the family has partnered with the Chelsea Hutchison Foundation to raise money to place seizure alert dogs, like Ellie, with families in need. Each trained dog can cost more than $15,000, according to KC, and the family has helped raise enough so far to place eight to 10 dogs with children who have epilepsy.

The foundation also exists to raise awareness of Sudden Unexpected Death from Epilepsy (SUDEP), a real fear for Mark and KC Butt and the reason they added Ellie, who will turn 3 years old next month. As many as 1 in 150 people with active seizures can die in their sleep from SUDEP.

Although Ellie won't be a certified seizure alert dog for several more months, KC and Mark say the dog may have alerted them to Kyle having a seizure two years ago by barking and waking them up in the middle of the night. After taking Ellie outside, they came back in the house to find Kyle shaken up and disoriented in the kitchen.

A month ago, Ellie protected Kyle by stepping in front of him so he wouldn't walk in front of a car in Vinnin Square, which was driven by someone who wasn't paying attention, according to KC.

Compared to Kyle's pre-surgery days, KC said the family will take its problems now and will figure out how to handle those couple of seizures.

"He's come a long way," KC said. "We all have (but) having a child with seizures is a stress that never ends."

 

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