My son was given a year to live as a baby – he survived until 24

Just two days before his death, Andrew Eveveloff wondered if he would still be able to finish his college semester. He was determined to be a journalist.

Andrew had congenital muscular dystrophy, which causes progressive muscle wasting, meaning Andrew used a power wheelchair and had a tracheostomy.

“Although my son is no longer here, he has set the bar for my family and I to live life as fully as possible. To appreciate life, with the proper perspective on it,’ Andrew’s father, Scott, tells Metro.co.uk.

“Even now, when I look at the photos of Andrew in our house, I can’t help but feel joy as I remember his zeal for life.”

Andrew was the third child born to Scott and his wife, and within moments of his birth, it was clear that he was not feeling well. At four months of age, several doctors had given him a terminal prognosis.

Initially, Andrew was misdiagnosed with Type 1 Spinal Muscular Atrophy, which is usually fatal within one to two years.

“Being virtually certain that Andrew was terminal, we decided to alleviate any suffering in his short life.

“We made the agonizing decision to remove her feeding tube and let nature take its course. We even started planning his funeral. However, as with so many other unexplained cases throughout his 24 years, Andrew not only defied these predictions, he defied death.”

Andrew pictured with part of the cast of the Law and Order Special Victims Unit in New York

Not being able to fit his wheelchair on a commercial plane, we had to rent our own, but it was worth it

It was something he did on multiple occasions.

“At 13, we were having dinner at Disney World Florida when Andrew had his first seizure. I am a doctor and had to personally perform CPR while waiting for the doctors.

“He survived, coming out of there with as much personality and sharp wit as he had always displayed.”

Even after Andrew was diagnosed with congenital muscular dystrophy, which has a life expectancy of 10 to 30 years, and despite the challenges, he made the most of his life.

Law and Order actresses Mariska Hargitay and Kelli Giddish give Andrew a kiss as he visits the set of the show.

Initially, Andrew was misdiagnosed with the type of spinal muscular atrophy, which is usually fatal within one to two years.

Andrew wanted to be ‘a normal kid,’ his father said. “Not ‘the kid in the wheelchair,’ but the kid who loved superhero movies, telling jokes and watching his favorite TV shows”

“We never really told him how much time he had left, as we didn’t know. But I think deep down he knew how lucky he was to be alive every day.

“He attended school, went on vacation, bowled, attended baseball and football games, sleighed in the winter and had picnics and picked berries and apples when the weather was nice.”

Scott’s son did not like receiving special attention or being treated differently from his siblings, often saying that he was ‘just Andrew’.

He wanted nothing more than to be a normal kid. Not “the kid in the wheelchair,” but the kid who loved superhero movies, telling jokes, and watching his favorite TV shows like South Park, Modern Family, and Law & Order SVU.

“Two years before he passed away, I actually took him to visit the Law & Order SVU cast on set in New York. Not being able to fit his wheelchair on a commercial plane, we had to rent our own, but it was worth it. He had the cast on and it is a memory that he will stay with me forever.

Reflecting on his son’s passing, Scott says: ‘I never asked myself ‘why us?’ because I was too busy living my life as Andrew’s father, making memories with him that would last a lifetime.’

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