Can you tell me a little bit about your SADS journey?
I’m a junior in high school. I used to be figure skater until I was diagnosed with ARVC, and that’s how I found out that I had it – I was skating when I had some arrhythmias. After a long process of being diagnosed, and going through a couple of surgeries, they decided that ARVC was what I had. That happened about a year and a half ago.
What was your reaction to your diagnosis?
I had a lot of free time after the diagnosis – when I was a competitive figure skater, that took up most of my day. I’d go to school and then go to the ice rink, and that would be it. So I had a lot of time, and I couldn’t join sports. I wanted to help people with similar conditions to mine, whether it be a SADS condition or a heart condition – even something they might not know they had. That’s why I started my charity, Heartfelt Harmonies, so I could help others.
Heartfelt Harmonies donates AEDs to organizations and youth groups who need them but might not be able to purchase them, so these facilities can be protected from cardiac events. I try to donate to underprivileged areas because a lot of people there might have an undiagnosed condition, and so they’re more likely to suffer from a cardiac event.
We’re hosting a photography exhibition with photos from all around Ireland in December; my grandfather was a famous Irish photographer and when he passed away, he left all his photos on flash drives. We printed them out and we’re going to raise money to get more AEDs.
What advice would you give to someone who was newly diagnosed with a SADS condition?
While initially being scared to hear about my condition, I have found that talking to others with similar conditions who had been through similar events was really helpful. ARVC being a hidden condition makes it very hard to find support and people who are able to understand.