Rocked by tragedy, family eyes chance to help others

“Expect nothing and appreciate everything.”

Whether it was a genuine life motto or just a catchy line that had caught his eye while scrolling through social media posts, the quote that Anthony Maffie ended up choosing for his Instagram bio seemed to fit the young man to a T.

Anthony Maffie

Diagnosed with epilepsy after a string of unprovoked seizures in his teen years, he changed his routines accordingly and came to accept his condition as just another one of life’s curveballs that he had to adjust to. He was, from the vantage point of those who knew him best, a happy kid — the kind of person who worked hard, followed the rules, and appreciated life’s simpler pleasures. He had a close-knit group of friends that he had met at Curry College, had recently found his calling in the school’s nursing program, and over the past few years in particular right up until the night of January 3, had been medically stable and out “living his life,” according to his mom, Lisa.

“Honestly for the past two and a half years he did not have any seizures,” Lisa said from her home on Morton Street. “He had been taking his medication and was just, you know, living his life. He went to France; he went to Montreal. He did all the things I think he wanted to do and never really gave [his epilepsy] a thought because he had it under control.”

For the Maffies, including Anthony’s father Bob and younger brother Austin, this is the closest thing to a silver lining they can cling to in the aftermath of Anthony’s sudden and unexpected death in his sleep on January 4. Authorities still do not know exactly how and when he died, only that it was definitely the result of a seizure and that he had been gone for several hours when Austin found him unresponsive in his bed late the following morning.

The official cause of death was given as SUDEP, which stands for Sudden Unexplained Death with Epilepsy — an excruciatingly vague explanation for something as devastating and as world-altering as the loss of a young adult in the prime of his life.

Lisa, who is a nurse practitioner, noted that very few people in the general population — or even in the medical field, for that matter — are familiar with the term SUDEP, although every year it claims more lives than a similar and far more well-known and publicized condition: Sudden Infant Death Syndrome, or SIDS.

“People generally don’t die from seizures, but people can die if they’re in a position and maybe they suffocated,” explained Lisa. “But there have been some cases where people have been found down and [the medical professionals] see it happen and they start CPR and they still can’t get the person back. So they don’t know if it’s something that happens within the brain that maybe shuts down the breathing response. They just don’t know enough about it.”

While still in the earliest stages of grief and just taking everything day by day, Lisa said the family, which has supported a number of causes over the years and always given back to the community, fully intends to put SUDEP awareness at the top of its priority list. They have already done some cursory research and are encouraged by the work of the Epilepsy Foundation’s SUDEP Institute, which is geared not only to families and individuals living with epilepsy but also to medical professionals, first responders, medical examiners, and the general public.

“One of the quotes from the SUDEP Institute is that everyone knows what SIDS is for babies and their goal is to say that everyone knows what SUDEP is as well,” said Lisa.

***

As they reminisce about the 22 years they got to spend on this earth with Anthony, the Maffies marvel about the amount of life he packed into those years but still feel as if he had so much more to live.

A physically imposing kid with a heart of gold, Anthony was the kind of person, Lisa said, who strived to make others happy.

Bob recalled how he loved to be physically active and was a great baseball catcher as well as a natural on the golf course, eventually developing a passion for the sport that bordered on a healthy obsession. He also took up swimming in his junior year at Canton High School, and he was a dedicated karate student who went on to earn a second degree black belt. He even played a year of rugby at Curry and likely would have continued playing if not for two shoulder injuries that required double reconstructive surgery.

Over the past few years, he had also gotten interested in cooking, and on December 1 he and his father started a Keto diet that both had been taking quite seriously.

“I want to say that we both lost over 20 pounds,” said Bob. “And Anthony,” Lisa added, “would plan all the meals and would cook them and would take pictures and send them to Bobby and be like, ‘This is what we’re having for dinner tonight’ so that they would stay on their diet together.”

Both parents also noted how often he put family first and how family events and traditions were always very important to him.

He and Austin, meanwhile, were the best of friends — a relationship that Bob said went well beyond the cliché of sibling bonding and only strengthened as they grew older.

“It was an awesome relationship,” added Lisa, recalling how spontaneous and fun loving they were together.

L-R: Bob, Anthony, Austin and Lisa Maffie

Always a solid student, Anthony had a stretch early in his college studies where he struggled with the nursing courses, but he got into a groove by the start of his sophomore year and was about to begin his sixth semester at Curry with an eye toward graduating next spring.

Lisa said he had started to develop a real passion for nursing, and his classmates and coworkers at Beth Israel Deaconess-Milton, where he was doing his clinical rotations, described him as a natural and someone with real potential in the profession.

“He wouldn’t come home and say, ‘Oh, I did this great job,’ but everybody that came through [the wake] just said what a wonderful way he had with patients,” said Lisa. “He always had a smile on his face, they said, never complained about any assignment he got, always happy to pitch in, happy to stay, so good with the patients.”

Lisa said Anthony’s own experiences with seizures enabled him to empathize better with patients, although it did not necessarily drive his passion for nursing.

Mostly, he just wanted to live and be treated as normally as possible, she said. And while there were times, particularly after a seizure, when he would question whether that would ever be the case, he seemed to be growing into his own over the past few years and had found some balance, aided by the support of his friends and loved ones.

“I think in the beginning he felt like it was going to impact him,” said Lisa, “but we just had a conversation a few months ago and he said, ‘I don’t even think about it anymore, Mom, because I always take my meds.’ He had an epilepsy medallion in case of emergencies and he just lived his life, you know.”

***

There is a tendency to get lost in the ‘what ifs’ when a young person dies suddenly and the Maffies have gone there too, wondering if there was something that they or anyone else could have done differently to have prevented this seemingly senseless tragedy.

But that is the hardest part about coping with SUDEP – there literally is no explanation, not one that scientists have uncovered at least.

For now, the family is just taking everything moment to moment, although they all feel, as Lisa put it, “very broken and very cheated.”

Both Lisa and Bob agreed that, in addition to the grief that comes with losing a son, the outpouring of support, although truly appreciated, comes with its own challenges as well.

Lisa noted, for instance, that they’ve gotten “hundreds and hundreds of cards” that right now are just too difficult to read, and even the words of support and well-meaning hugs can be overwhelming at times.

The one thing Bob said he does not want to hear is that “This is the Lord’s work” because, right now, it just makes no sense to him. “Here’s a good kid who did — all four of us, all we did was donate our time for everybody — and that’s what you get?” he said.

“Or someone will say, ‘Time heals all wounds.’ Well, for me, there isn’t enough time.”

Although anything about Anthony right now is painful to listen to, the Maffies stressed that they do appreciate all of the well wishes and the “great support” they have received from family members, neighbors, the Canton Police Department and Canton community at large, and even strangers.

Probably the best thing that someone could do to support them at this time, Lisa said, is to make a donation on behalf of SUDEP awareness or help spread the word about what SUDEP is, particularly for those families who are living with epilepsy.

“We’ve asked for donations to the epilepsy foundation specifically for SUDEP,” said Lisa, “because they don’t know enough about it and yet your risk for it if you have epilepsy is one in 1,000, and it goes down to one in 150 if your seizures are uncontrolled.”

Going forward, the Maffies intend to become active with the Epilepsy Foundation of New England and would love to see others from the Canton community join the effort to help honor Anthony’s memory. The foundation has a public service campaign called Light the Way Today, and on March 26, supporters will light a candle in memory of SUDEP victims while also spreading the word on social media using the hashtag #lightthewaytoday. To learn more about the movement and to make a donation, visit www.lightthewaytoday.org.

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