In October of 2022, Matthew was taking a dinner break during a World of Dance rehearsal in New York City when he experienced Sudden Cardiac Arrest (SCA). It was his first symptom of an underlying heart condition.

A friend started CPR, and Matthew was shocked twice with an AED before he was transported to the ER, where he had an ICD implanted. Matthew’s mom, Christy, connected with the SADS Foundation after Matthew experienced an inappropriate ICD shock in December of 2022. “SADS sent me questions to take to his doctor,” says Christy.

In January of 2023, genetic testing revealed that Matthew had ARVC (PKP2 mutation). “I lost my home, career, and finances in New York City and moved back with family in Texas,” says Matthew. “But with my family’s help, at physical and emotional capacities, I’ve been able to regain humanity, working and seeking normalcy again. It’s been a rough journey but developing a mental capacity that can handle the chaos of this disease has been the most beneficial.”

The four months between Matthew’s SCA and his diagnosis of ARVC was very difficult on Matthew and his family – who felt that they were in the dark, and didn’t know what steps to take. Christy and Matthew both found resources at the SADS Foundation to help them during this difficult time.

“One of the biggest things I remember from our journey was our initial conversations with the SADS Family Support Director, Genevie,” says Christy. “When we first talked with her, Matthew was in a very dark place – the SCA was very hard on him mentally and emotionally. When Matthew talked to Genevie, he finally felt understood.”

For Matthew, one of the biggest adjustments – and biggest hurdles – after his ARVC diagnosis has been restricting his exercise. “After diagnosis I had to give up my entire identity and career as a dancer/dance instructor for the sake of not increasing my symptoms and worsening my heart disease,” he says.

Matthew has also found the general lack of understanding about ARVC to be difficult. “Most will have the patience to listen and grieve, but all will truly not grasp the pain, unless they are directly affected by it.”

For those who’ve newly received a diagnosis of ARVC, Christy recommends connecting with the SADS Foundation and the Johns Hopkins ARVC Program. She also stresses the importance of getting genetic testing, which revealed that both Matthew’s father and sister were also positive for the PKP2 mutation of ARVC. “I don’t think we fully understood what ARVC really was or the rarity of it. Genevie connected us to Hopkins, she helped make that all happen and we are so very grateful to now have Dr. Calkins and his team on our side,” she says.

“There is much to learn and so much strength to be developed after an ARVC diagnosis,” says Matthew. “Your heart will be a lot stronger in the end.”

Both Matthew and Christy are hoping to see new, improved treatments developed for ARVC that overcome the limitations of available therapies. “When I go to work I have the constant underlying feeling that something horrid could happen. No one should feel that way,” says Matthew. “It’s amazing what the medical world has done for ARVC care. And that a safety net has been created with the ICD. But I’d prefer to have autonomy over my daily activities again, without the fear of electricity or death.”

Christy wants to see her family live without limitations. “There’s a lot of good now that we’re pulling hope from, but this is not the route we would have wanted to see our family have to take,” she says. “I want peace of mind for our whole family.”