I was lucky – I was diagnosed at birth. The doctors knew something was off with my heart rhythm when I was in utero, but the technology back then wasn’t advanced enough to know more than that. I was in distress when I was born, and I was born with heart block along with my LQTS Type 2. I was really fortunate to have pediatric cardiologists on the other side of Ann Arbor who knew about LQTS. I was zipped across town a few hours after I was born, and given my first temporary pacemaker. A couple days later, I was given my permanent pacemaker and started on a beta blocker. I’ve had the same course of treatment my whole life, and had an ICD/Pacemaker implanted in my early 20’s.

Things have come full circle with my daughter, Gabby, who had a similar presentation when she was born – she had heart block, and her first device put in right when she was born. But we knew a lot more this time around.

When I was growing up, the SADS Foundation was the only resource out there for families with LQTS. In the 1980s and 1990s, there wasn’t an abundance of information about LQTS – I remember my mom telling me that when they started learning about it, after I was born, they asked the cardiologist for all the medical journal information they could find. And it was only a handful of articles – they were able to print out every single article that existed. The SADS Foundation was a good repository for them.

A few years after my husband Brad and I moved to Michigan, the SADS conference was in Ann Arbor. I went to the conference and got reconnected. I was starting to have questions about having a child, being pregnant with a SADS condition, and what it would look like for the baby if she had it. I got connected to Alice, and I was able to meet other people with my heart condition face-to-face, which was pretty special.

After the conference, I emailed Alice directly about pregnancy and SADS conditions; I was hoping I could talk to somebody who’d gone through the experience. She responded very quickly and immediately connected me to a couple individuals who were really generous and shared their stories with me. Their openness about their experiences allowed me to feel confident about my decisions.  They were so important to me during pregnancy, and I still consider them friends. 

I started volunteering to be part of the Community Engagement Committee when I went to the conference in Ann Arbor. I was talking with volunteer Jen White and Alice about a research proposal – I have a history in clinical research and grant work – and we worked together to put together that application. That was the gateway to other activities. I like being on the CEC committee, and giving a little slice of the knowledge that I have to the SADS Foundation.

I’m also a facilitator for the SADS Foundation’s ICD Support Group. It was an honor to be asked to lead the group – I was very flattered. Even though I’m a facilitator, I’m also very engaged in the conversation, and it’s been a very powerful experience for me. It’s become a sacred time each month that my husband and I work very hard to block off.

It’s hard to describe what the feeling is when you find someone who’s going through the same challenges that you are. It’s validating. We all have different backgrounds in the support group – we have different communities and families, but we have that one unifying thing. And for many of us, that was such a pivotal moment in our lives, when we learned we were going to be living with an ICD – or woke up with one in our chest. It’s pretty cool that SADS was able to bring this group of people together and provide a platform for these discussions.

One of the reasons that I am active with the SADS Foundation is that I was grateful for those who were open with me, and I hope that my own experiences can help someone else who may feel like they need it. If you’re interested in getting involved, the SADS Foundation is a small organization – even though it provides a lot of information and resources, it’s very personal and personalized. Reach out to any individual person you find on the website and they can find the right activity for you. It’s easier than you think to get involved!

Are you interested in becoming a volunteer at the SADS Foundation? Click here to get started.

This Heart Month, volunteer Sandy Cowin made a huge impact through sharing her story with her local news station, Spectrum News 1, which broadcast her story and the SADS warning signs across the state of New York, and writing an article for her Employee Assistance Program newsletter, which was distributed across the State University of New York System Offices.

“I’m starting to get comfortable with sharing my story,” she says. “I’m happy to finally start contributing to awareness in my community and now I don’t want to stop!”

Her father passed away suddenly from cardiac arrest in 2009 as a result of Brugada Syndrome at the age of 65. “As anyone who loses someone suddenly knows, it’s really shocking,” she says. “He led a very healthy and active life until he died suddenly and unexpectedly, although there were warning signs for many years, including fainting during a fever.”

Sandy and her siblings were then tested for Brugada Syndrome, but their initial test came back inconclusive. Seven years later, Sandy retested as part of a clinical trial at NYU Langone Health and tested positive through a flecainide infusion.  

Her son, Jackson, a high school senior, is closely monitored as well. He’s an active runner who participates in both cross-country and track. “We are under the care of great doctors and have no restrictions on physical activity,” she says. “There are many preventative measures we can take to limit the chance of a cardiac event.”

Sandy wants to spread awareness of the warning signs – to make sure that people get proper treatment and get diagnosed early. “Don’t put symptoms aside,” she says, “because sometimes the first sign could be a cardiac arrest. I am very thankful for my diagnosis so that we get the treatment to ensure a long and healthy life.”

If you’re interested in becoming a media volunteer like Sandy, click here to get started.

Brian was a junior and on the dean’s honor list at the University of Wisconsin-Madison, studying biomedical engineering and computer science. He truly loved his college experience and formed an amazing second family away from home. We are comforted knowing he was the happiest he’d ever been especially after recently landing an internship as a biomedical engineering intern at Medtronic in the cardiac rhythm and heart failure division of all places.

Just a normal day in the life of a college student during exam week, Brian was in his apartment all day studying on and off for a test. He had been complaining of what he thought was an abscessed tooth for a day and a half. He still had one more final exam, but it became very painful. He called home complaining it was getting worse which was unusual for Brian.

I called his doctor to get him an antibiotic to help until he got home. They rightfully refused as he was too far away to be evaluated. I then urged Brian to go to the immediate care, but he thought it could wait. I also urged him to call his doctor which he did as we noticed that they were his last three phone calls.

Brian’s roommate was studying in the next room and after we contacted him, he went to check on Brian and found him sitting up in his chair, already gone. It had been a couple hours since he was last seen acting normally. We were told nothing was found wrong with the tooth or with Brian. We now suspect it was a sudden cardiac arrest.

Brian’s goal was to find a career “ to improve the quality of life for others”. He always listened to others and made them feel like they mattered. We miss him so much and think about him every day. Brian was brilliant, humble, and kind. He made a great impact on many lives. It’s still hard to believe he’s not going to walk through the door from school with a big smile on his face, dragging in his pile of dirty laundry. He always ended the day saying or texting  “I love you”. The summer before his death, we had secretly recorded Brian playing Pearl Jam’s “Just Breathe” on the guitar – it has become our motto for moving forward.

We are so grateful for the help we received from the SADS Foundation. They were here for us to guide us on our journey. They were our lifeline, helping us navigate next steps for evaluating Brian’s younger brother. They continue to support us through informative e-newsletters, educational family webinars, and the virtual family conference where we connect with world experts and other SADS families. We ask that in memory of Brian, you please take a moment to donate to the SADS Foundation.

My son, Sonny Jude, went unresponsive (stopped breathing and his precious heart stopped beating) at six months old.  His babysitter saw this and performed CPR and resuscitated him.  It was then we learned that Sonny Jude has LQTS (Long QT Syndrome).  In October 2022, when he was 13 months old, I put him down for a nap and he didn’t wake up.

My baby boy, Sonny Jude was the most loving, sweet, bright soul I’ve ever known.  In his short life, he made such an impact on everyone who had the honor of knowing him.  His smile would light up a room, he only ever knew love and happiness.  He loved waving to everyone. He loved laughing, smiling, playing, being outside, swinging, playing in the splash pad, snuggling, climbing stairs, his dogs, Paw Patrol, Bluey, french fries, and most importantly being around the people he loved. Sonny Jude especially loved his big sister Lyla, they were the best of friends, he loved learning from her and playing with his big sister.  His first word was “Lyla” or as he said “Wy-wa.”

My favorite memory of Sonny Jude is actually the whole summer before he passed.  We spent nearly every day at his grandparent’s house, playing on the splash pad or in their little pool with his big sister, Lyla.  Splashing in the water, sitting on the swing with us, lounging on the lawn, plucking blades of grass and offering them to us or the dogs, and always waving ‘hi’ to everyone for every occasion.

I’m trying to transition my grief and devastation into something positive.  Sonny Jude was a happy boy, and I want to put some of that positive and loving energy back into my community to bring awareness to arrhythmias, and how important learning CPR is. 

Sonny was always up early and loved pancakes, so it seemed right for our first fundraiser to be a Pancake Breakfast on February 19, 2022.  We wanted to raise funds and awareness for the SADS Foundation, and put fliers out at Lyla’s school, dance studio, and the local YMCA.

February 19th I held my first fundraiser, the first I’ve ever done. The SADS Foundation is specific to what my little Sonny Jude had, and they’ve been so helpful in assisting me with fundraising.

CPR is so important.  A 16 year old babysitter that had taken CPR revived Sonny In March 2021.  It doesn’t matter how old you are when learning CPR, as every second counts when you can save a life.

My goal with the Sonny Jude Foundation is to educate the general public about heart arrhythmia syndromes, bring awareness to the importance of CPR and to bring joy to others through a variety of fundraisers, projects, volunteer work and also through random acts of kindness, specifically with our “Have a Sonny Day” project. I look forward to making our Pancake Breakfast Fundraiser annual, and look forward to continuing working with SADS.

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.

Donate Here #24ForRy

On Christmas of 2016, my brother Ryan had passed away in his sleep. At 24 years old, he was a young, healthy, and motivated individual who was just getting ready to take hold of his independent life. His brilliance and work ethic had led him through successes at Iona Prep High School and Georgetown University in Washington D.C. However, his intelligence was second to his generosity and loving nature. Ryan had embraced the role of being the eldest sibling as he would always make time for family. Whether it was taking me to six flags or driving my sister hours to watch the Women’s World Cup, he never fell short of showing how much he loved us. He was also a charismatic fiancé to his high school sweetheart in which he would have spread his joy to a family of his own. He was on a path in life that would have been filled with success and many moments of making others laugh and smile as he so often did.

Today, there is still no answer as to why Ryan had passed away that night. That brought me to The SADS Foundation, the leader for research in the field of Sudden Arrhythmic Death Syndrome. I wanted to start this fund with an event in which people would run 24 minutes July 31st, 2021 to honor Ryan and raise awareness and donations to SADS. The money donated to this foundation will allow for further medical research and development for the leading medical professionals in the field of Sudden Arrhythmic Death. As there are thousands of individuals and families that are heartbroken from SADS, there is still much work to do. I appreciate you listening to his story and I hope one day your donation and awareness can help save a life like Ryan’s. As Ryan’s senior yearbook states, “The greatest investments people can ever make are investments in those around them.” #24ForRy