Just two days before his death, Andrew Eveloff wondered if he could still finish his college semester. He was determined to become a journalist.
Andrew had congenital muscular dystrophy which results in progressive muscle wasting, meaning Andrew was a power wheelchair user and had a tracheostomy.
“Although my son is no longer here, he set the bar for my family and I to live life as fully as possible. Appreciating life – with the right perspective on it,” Andrew’s father Scott tells Metro.co.uk.
“Even now, as I look at the pictures of Andrew in our home, I can’t help but feel joy at remembering his zest for life.”
Andrew had congenital muscular dystrophy which results in progressive muscle wasting, meaning Andrew was a power wheelchair user and had a tracheostomy
Andrew was Scott and his wife’s third child, and within moments of his birth it was clear he was not well. By the age of four months, he had received an incurable prognosis from several doctors.
First, Andrew was misdiagnosed with Type 1 Spinal Muscular Atrophy, which is usually fatal within a year or two.
“Since we were virtually certain that Andrew was incurable, we decided to alleviate whatever suffering he had in his short life.
“We made the agonizing decision to remove his feeding tube and let nature take its course. We even started planning his funeral. However, as with so many other inexplicable occurrences over his 24 years, Andrew not only defied those predictions — he defied death.”
Andrew pictured with some members of the Law and Order Special Victims Unit in New York
Since we couldn’t fit his wheelchair on an airliner, we had to charter our own – but it was worth it
It was something he did on several occasions.
“We were having dinner at Disney World Florida when we were 13 when Andrew had his first seizure. I am a doctor and had to personally perform cardiopulmonary resuscitation while waiting for paramedics.
“He survived and came out of it with as much personality and sharp wit as he has always shown.”
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 best of 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 spinal muscular atrophy, which is usually fatal within a year or two
Andrew wanted to be “a normal kid,” his father said. “Not ‘the kid in the wheelchair,’ but the kid who loved superhero movies, told jokes, and watched his favorite shows on TV”
What causes muscular dystrophy?
Around 70,000 people in the UK have MD or a related condition.
MD is caused by changes (mutations) in the genes responsible for the structure and function of a person’s muscles.
The mutations cause changes in the muscle fibers that affect the ability of the muscles to function. Over time, this leads to increasing disability.
Source: NHS
“We never really told him how much longer he was gone because we didn’t know. But I think deep down he knew how lucky he was to be alive every day.
“He went to school, took vacations, played bowling, attended baseball and football games, went sledding in the winter and picnicked and picked berries and apples in the warmer weather.”
Scott’s son didn’t like special attention or being treated any differently than his siblings, often saying 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, told jokes, and watched his favorite TV shows like South Park, Modern Family, and Law & Order SVU.
“In fact, two years before he died, I took him to see the SVU cast of Law & Order on a shoot in New York. Since we couldn’t fit his wheelchair on an airliner, we had to charter our own – but it was worth it. He had the cast stitches and it’s a memory that will stay with me forever.
Of his son’s death, Scott says, “I never asked myself why us? because I was too busy living my life as Andrew’s father and creating memories with him that would last a lifetime.
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