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Rare disorder can’t stop East Islip homecoming king

East Islip High School homecoming king Kyle Engblom,

East Islip High School homecoming king Kyle Engblom, 17, and his mother, Gina Engblom, enjoy the homecoming parade on Saturday, Oct. 8, 2016. Photo Credit: Ursula Moore

Kyle Engblom’s charming demeanor never wavered as he was pushed in his wheelchair by his mother during the East Islip High School homecoming parade on Saturday.

Sporting an infectious smile and a friendly, upbeat demeanor, he proudly traveled the parade route with his fellow seniors and their Christmas-inspired float, complete with a decorated tree and Santa Claus coming through the chimney.

"Kyle loves being with his peers. All the kids have been amazing at this school with Kyle," said Gina Engblom, 49, whose son was cheered on by people lining the parade route that started at Ruth C. Kinney Elementary School and ended at the East Islip High School football field.

It was already a victorious day for Kyle Engblom — and this was before he was named homecoming king at halftime of the football game.

He was born with Fatty Acid Hydroxylase-associated Neurodegeneration, a rare and progressive disorder of the nervous system that causes problems with movement and vision, according to the government’s National Library of Medicine website.

The first noticeable indications are changes in the way a person walks, or frequent falls. The disease can cause involuntary muscle cramping, and most who are diagnosed with the condition eventually need a wheelchair.

Gina Engblom knew something was wrong with her son early in life, but doctors couldn’t figure it out.

“When he was 3 years old, he was always tripping and falling. He was progressively going downhill,” she said.

It took 10 years before the National Institutes of Health confirmed the diagnosis. He  started having to use a walker at the age of 13, and began using a wheelchair at 14.

The disease also affects his eyesight and speech.

“His peripheral vision is off,” his mother said. “Kyle can speak but the muscle around his lungs have deteriorated. His speech is low and mumbled.”

But according to classmate Taylor Kozak, his ailment hasn’t affected his spirit.

“Kyle has a great personality,” said Kozak, 17. “Even though it’s hard for him, he is like any other teenager. He loves the beach and he’s fun to be around.”

The parade fun was preceded by his classmates rooting him on at East Islip’s pep rally the day before. These moments fulfill Gina Engblom’s wish that her son be included in life, but he is already looking ahead, with hopes of studying forensics after he graduates from high school.

“He doesn’t let the disease get him down,” she said. “Kyle is happy and outgoing. He is always smiling.”

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