A bittersweet anniversary: Jordan Boyd's legacy lives on at Halifax heart clinic
The 16-year-old hockey player died of an undiagnosed inherited heart disease in 2013
For Stephen and Debbie Boyd, Friday was a bittersweet day.
Instead of celebrating their son Jordan's 28th birthday on May 23, they were at the Queen Elizabeth II Health Sciences Centre in Halifax to mark the one-year anniversary since a clinic was renamed in his honour.
The Jordan Boyd Inherited Heart Disease Clinic provides care to families across the Maritimes affected by known or suspected inherited heart conditions.
Jordan was 16 when he died of an undiagnosed inherited heart disease in 2013. The hockey player from Bedford, N.S., collapsed on the ice during training camp with the Acadie-Bathurst Titan of the QMJHL.
It was later determined that he had a condition called arrhythmogenic right ventricular cardiomyopathy.
After dealing with the shock of his death, his parents turned their grief into action.
They have worked to raise awareness of inherited heart diseases and raised over $1.3 million in partnership with the QEII Foundation.
"It was very important to us to try and make a difference," Stephen Boyd said.
"We're quite convinced that he would want us to take this and try and do something positive that could help others. And that's what we've tried to do."
Having the clinic named after their son is deeply meaningful, he said, because it ensures he is remembered and that his life made a difference, which helps the family cope with their loss.
Dr. Ciorsti MacIntyre, director of the clinic, said the facility, founded by Dr. Martin Gardner, was one of the first in Canada specializing in inherited heart diseases.
She said the Boyd family's fundraising has been instrumental in supporting the training of specialists and funding a research co-ordinator.
"Research is so fundamental to what we do and it's allowed our clinic to really grow and have a greater impact on the community," MacIntyre said.
She said the clinic has seen 500 patients in the last year and noted staff often see families at their most difficult times after an unexpected death.
MacIntyre said in those instances the clinic aims to not only diagnose what happened but find other family members who may have inherited the disease and treat them.
In fact, after Jordan's death, Debbie Boyd discovered that she also had an undiagnosed heart condition.
While at the clinic on Friday, she had her implanted defibrillator checked by MacIntyre.
Stephen Boyd said the family plans to continue with its fundraising and education efforts.
"Our work's not done," he said.
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