After the death of their teenaged son from arrhythmogenic right ventricular cardiomyopathy, a Nova Scotia family is working to raise funds and awareness about the rare heart condition.

Hockey prospect Jordan Boyd was just 16-years-old and beginning his Quebec League journey when an undiagnosed heart condition took his life almost two years ago.

“We lost our son Jordan on his first day of training camp with the Acadie-Bathurst Titan and unbeknownst to us, he had an undiagnosed heart condition called ARVC,” says Jordan’s mother Deborah Boyd.

Arrhythmogenic right ventricular cardiomyopathy, or ARVC, is a rare condition affecting the muscles on the right side of the heart. It often goes undetected, and can cause sudden and unexpected death.

The condition is inherited, so after Jordan's death, his family was tested.

“We found out that I had the gene as well, as well as my other son Greg,” says Boyd.

Greg has the gene, but hasn't developed the condition. He is still at risk and his health is closely monitored.

“It definitely makes me think a lot about limitations, about what I can and can't do, in terms of whether or not I can really push myself physically or things I should stay away from, like caffeine and that sort of thing,” says Jordan’s brother Greg Dobson.

For Boyd, the condition is active and as a result, she was given an internal defibrillator, or ICD, eight weeks ago.

“It's kind of like a pacemaker,” says Dr. Catherine Kells, the division of cardiology head at the QEII Health Sciences Centre. “It's a small device…inserted surgically and it just stays there, monitors things, and it only reacts if one of these bad rhythms occur. It gives an internal shock and it can save the life of the person immediately.”

Dr. Kells works in the inherited heart disease clinic where Jordan's family has undergone their testing and care. She says Boyd's ICD is unique.

“Most of the defibrillators are not yet compatible with MRIs. They are made of metal and you can't go in an MRI machine, but Debbie had a special one put in, which was MRI compatible, which required special ordering and custom development,” says Kells.

MRIs are an important diagnostic tool for heart disease.

Dr. Kells hopes all internal defibrillators will be MRI compatible in the near future.

Boyd says she was reluctant at first, but is happy she decided to go ahead with the procedure.

“I have a Band-Aid now, that if my heart stops, unlike Jordan, I'll be defibrillated right away,” says Boyd.

In honour of their late son and brother, Boyd and Dobson have been gearing up for the annual Jordan Boyd Celebrity Hockey Challenge.

Proceeds from this year's tournament will be split between the Heart and Stroke Foundation and the QEII foundation, in support of the inherited heart disease clinic and research about ARVC.

Jordan's family hopes by raising funds and awareness, other families will learn about the rare condition.

“I think by sharing our story and similar stories in the clinic, it makes people think about possibly thinking twice, making sure they check up with doctors regularly and if there is a problem, don't let it go because you never know what could be underlying,” says Dobson.

The Jordan Boyd Celebrity Hockey Challenge takes place August 8 at the BMO Centre in Bedford, N.S.