Thirty-nine. That’s how old I am. It’s also the age when my father died. 

Losing my dad when I was just 11 years old has had a profound impact on me. Not only was I forced to navigate growing up without him, but I was also diagnosed with the same medical condition that took his life. 

I have become my own person, yet at the same time, I will always be influenced by his legacy. Looking back on his life, I wonder about his thoughts, motivations, and goals. He was a firefighter, an EMT, a beloved friend and brother to his 11 siblings. As his second-born child, I often wonder what he saw for me. And now, as I outlive him, I can’t help but reflect on my own life.

​​I am a runner. For 15 years, running has been my escape and passion. But being a runner with Long QT Syndrome (LQTS) is a different story. LQTS is a genetic heart condition that can cause sudden cardiac arrest, seizures, or even death. And to make matters worse, it runs deep in my family.

In June 1995, my dad was on a business trip to the Catskills. Serving as a fire district commissioner, he would travel to conferences around the country. So when I said goodbye to him two days prior, it was like any other trip. I waved as he drove off while I was playing in a street hockey game for my best friend’s birthday. The next day, he played golf with friends and headed to bed, planning for an early start in the morning. Nothing seemed unusual; there was no warning of what was coming.

I remember walking home from school with my sister that day. When we reached our block, several cars were parked outside our house. Once we stepped inside, it felt like there was a party that someone forgot to tell us about. But that couldn’t be the case, as I remembered my dad wasn’t home. Everyone in the house looked grim. My mom swiftly brought us into my sister’s room. She told us our dad had died in his sleep. 

“What did he die of?” I asked. “We don’t know,” my mom responded simply. I didn’t cry because it didn’t register with me. The pieces didn’t add up. I was in denial, “How could this have happened? He’s not old or sick. It doesn’t add up,” I thought. In hindsight, that denial probably suppressed those feelings for years.

“What did he die of?” I asked. “We don’t know,” my mom responded simply. I didn’t cry because it didn’t register with me. The pieces didn’t add up. I was in denial, “How could this have happened? He’s not old or sick. It doesn’t add up.”

My dad’s autopsy revealed that he had sudden cardiac arrest, possibly caused by a bicuspid aortic valve that was slightly calcified. That is what the official report indicated, so this is what we took to be the cause of death. Later, we would learn that this was simply part of the story. The true answer had been in front of us for years. 

My aunt Kathy, whom I had never met, died at 13 years old. She was babysitting a cousin when she had a fatal seizure. At that time, her death was thought to have been related to a brain condition. Everyone accepted this cause because my grandma also suffered from seizures. We would later learn that seizures ran on her side of the family. My grandma had siblings who also suffered from seizures and one relative who had died unexpectedly. A brain issue — that’s what we all believed it to be.

In 2004, my Uncle Bill, my dad’s youngest brother, started experiencing dizzy spells around the time he was undergoing a physical to become a corrections officer. Doctors recommended he take a genetic test, which was relatively novel at the time. That’s when he and the rest of my family learned of Long QT Syndrome. The test revealed that my uncle had a positive genetic marker for it. From there, many people on my father’s side also took a genetic test and learned they had the marker. My aunts, uncles, and cousins had it. My brother and sister would discover that they had it too. 

I was among the last in my family to participate in the testing. I was in upstate New York at Binghamton University, studying cinema and actively planning for a future as a filmmaker. I decided to take the test before my final semester. I had never experienced any symptoms. So, at the age of 22, I was shocked to learn that I, too, had come back positive for Long QT Syndrome. And it would affect me for the rest of my life.

At the age of 22, I was shocked to learn that I, too, had come back positive for Long QT Syndrome. And it would affect me for the rest of my life.

I felt denial, a denial similar to the one I had when my dad died. I was young and never had a major medical incident. I never broke a bone and never took more than a few sick days off from school. I was active, having played hockey throughout high school. Hearing the diagnosis and what it entailed didn’t frighten me as much as angered me. Since LQTS was relatively unknown then, we didn’t know how serious a lifestyle change would be. All we knew was that my dad and aunt had died suddenly. That meant the risk was there for us as well. The only solution at the time was to take beta blockers and have surgery to get an implantable defibrillator as a safety net. With it came strict rules: no strenuous activity, no heavy lifting, and absolutely no contact sports. My life would never be the same,

After the diagnosis, I looked for ways to channel my feelings. I picked up my camera to document my family’s history and the events leading up to my surgery. I interviewed my mom, brother, aunts, uncles, and cousins to piece together a story. It felt cathartic. It may have possibly been the first time my family could express their feelings about how my father’s death and the condition had impacted their lives. It also gave me some much-needed purpose. Although our story felt unique, other families might be suffering through the same issues or ones that weren’t yet aware of them. We didn’t know.

In 2007, I finished my senior thesis, a short documentary called “Broken Hearts, Electric Shocks” with a budget of less than $200. It helped raise awareness of a relatively unknown but deadly condition. But even after completing the documentary, it always felt like there was more to tell. My time living with the condition was just beginning. We didn’t know what was next.

It was a tough pill to swallow when I was told I had to give up most strenuous physical activity, including hockey. I was relatively young and still felt energetic and healthy. Having Long QT Syndrome made me feel boxed in. While I always wanted to understand the root cause, our doctor at the time didn’t seem forthcoming with information. We were told, “There is no cure. You need a defibrillator,” as if they were churning us out in a factory.

Jogging seemed like the safest activity I could do. While I was never a serious runner, it soon became my escape. I always figured cardiovascular exercise, such as running, was the best way to keep my heart strong. However, no one specifically told me if I should or should not do it. Again, we didn’t know.

I started small, just a couple of miles at a time, finding it a great way to burn off stress and clear my head. Soon after, I grew confident enough to push myself harder. I tested my limits, seeing when someone told me to stop. Perhaps it was denial kicking in again, but I just kept moving.

My family changed electrophysiologists around this time to one who was much more forthcoming and also a runner. He supported me in testing my running limits. We kept an eye on my heart rate to ensure I wasn’t crossing any abnormal limits for someone with LQTS. 

I discovered that I like big goals and setting my sights on seemingly unattainable things so the journey will be as important as the destination. Having never run more than two miles at a time, I decided to tackle the Long Island Half Marathon, which would be 13.1 miles. My family changed electrophysiologists around this time to one who was much more forthcoming and also a runner. He supported me in testing my running limits. Although I wasn’t on medication, we kept an eye on my heart rate to ensure I wasn’t crossing any abnormal limits for someone with LQTS. 

The day came, and even with some doubts, rain, and pre-race jitters, I finished my first half marathon in under 2 hours. That feeling of accomplishment was unlike anything I had felt before, and I started my long-term healthy addiction. Running was now one of many things that defined me, not just the heart condition. Soon after, I was completing half marathons regularly. In 2012, I pushed my limits even further and ran the full marathon of 26.2 miles. While my time was nothing to brag about, I was proud of completing it. Although it wasn’t a conscious goal of mine, part of me hoped someone would see what I had done, and it would give them some hope for LQTS. Maybe it wouldn’t be so terrible after all, and we could live normally. But there was more we still didn’t know. 

I know how fortunate I am and often feel guilty about it. Others are not so lucky, and that’s part of the reason I suppress my feelings. My family continued to have incidents, and more were diagnosed with LQTS. My cousin passed out at a train station and hit her head, falling down the stairs. Thankfully, she was ok, and she also received a defibrillator and was prescribed medication.

My brother, Brian, had the scariest incident of all. When he was 26, his defibrillator malfunctioned and shocked him without an LQTS incident. If you are curious about what it feels like, imagine someone hitting you in the chest with a baseball bat and the feeling traveling throughout your whole body. His device began beeping the day before, indicating the battery was low and must be replaced. While he was in the ER, it unexpectedly triggered and shocked him. It continued to shock him multiple times until he finally went under anesthesia and into surgery,

The surgery should have been a straightforward procedure. However, the leads, the wires that attach the device to your heart, had been trapped under scar tissue from the initial placement. It required using a laser to remove it. The laser missed by a fraction of an inch and punctured a hole in my brother’s heart. Brian bled internally and almost died on that operating table. He woke with a breathing tube down his throat, utterly oblivious to what just happened and how lucky he was to be alive. It was a traumatizing event for him and our family, which took him months of physical recovery and years of emotional recovery. It reminded us of how serious this is.

When he was 26, his defibrillator malfunctioned and shocked him without an LQTS incident. If you are curious about what it feels like, imagine someone hitting you in the chest with a baseball bat and the feeling traveling throughout your whole body.

On Christmas Eve 2013, my defibrillator began beeping, which meant my battery had also worn out. Remembering what my brother experienced made me dread going into surgery, and I had to wait all winter for it to happen. My operation was scheduled for May 1, 2014, the same weekend as the Long Island Marathon. Although this was my second operation, I was more fearful than before. Thoughts of what I could lose if something went wrong ran through my head until I was under anesthesia. I hoped to wake up safely. 

Fortunately, I did, and I was grateful that the surgery went smoothly, but the recovery was more challenging than the first time. I felt weak and sore for an extended period. Laying in that hospital bed, I couldn’t stop thinking about how lucky I was and how I’d much rather be at the races. It was frustrating to be unable to exercise or participate in any physical activity for almost four months while waiting for the new leads to settle into my heart. During that time, I fell out of shape and struggled with depression. In the aftermath of losing my outlet and escaping from stress, I had doubts that I could return to where I was. I saw myself again defined by my heart condition and not as strong as I once thought I was.

I did my first 5K with light training almost five months later. I spent the rest of the year slowly recovering my strength and stamina. It was a massive step for me to have that physical outlet again. However, I still wanted more things to achieve and felt more determined than ever to make them happen.

In 2015, my goal was to complete the New York Marathon. While training through the hot New York City summer, as part of Fred’s Team, a charity for Memorial Sloan Kettering Cancer Center, I shared my health struggles in the hope of giving back in some way to help others. On November 1, I completed the marathon. Running the New York Marathon was one of my life’s most demanding yet rewarding moments. Through all the pain and months of training, hearing the cheers of my friends, family, and thousands of people made it all worth it. I completed the race without complications and with a strong heart. Two years later, I ran the race again and proved I could continue doing this. I was not just a person with a heart condition —I was a marathoner. Since then, I’ve taken it a step further. I finally resumed playing hockey after 10+ years off the ice; I wear extra padding to protect my device and keep an eye on my heart rate during those intense sprints, but returning to my childhood passion has been a thrilling experience. And last year, I did the unimaginable and completed my first triathlon. How far will I take this as I move beyond 39 and outlive my dad? I know there will be more bumps along the road, but I am excited by the feeling that anything is again possible.

However, even with all these personal accomplishments and proud moments, I can’t help but feel the void of not having my dad there to see them. I would have loved for him to have been there to greet me at the finish line one time, and I would trade all the miles and medals to have him here with me. Unfortunately, I can’t, and dwelling on it won’t change a thing either. So, instead, I’ll do my best to do what I can with what I have and tell our story. And if somebody didn’t know about LQTS, I’m glad they know now, and I will have done something positive out of a negative situation.

While there is still no cure, we know more about LQTS now and are getting better at managing it.

While there is still no cure, we know more about LQTS now and are getting better at managing it. Defibrillators are less widely distributed, and medication is preferred over invasive surgery. Simple things like staying hydrated, monitoring electrolytes, and maintaining a healthy lifestyle go a long way. While many incidents still occur in people who do not know they have it, those who do are far better off. I hope that the next generation can grow up with relatively normal lives. And with breakthroughs in medicine, such as gene therapy, there is hope that future generations won’t face the same uncertainties and challenges my family faced.

Ultimately, my story is not just about running or overcoming a health condition. It’s about finding purpose in life and honoring my father’s memory. While I may never fully know the man he was, I try to live my life in a way that honors him. I attempt to make the most of every moment and pursue an extraordinary life. And while some may have questioned the chances I took, the real joy of life comes from taking risks and daring to do mighty things. I know life is short, and we should make the most of it. And through it all, I hope my dad is somewhere happy to see that his son is trying to carry on his spirit.

Further information:

• https://www.mayoclinic.org/diseases-conditions/long-qt-syndrome/symptoms-causes/syc-20352518
• https://sads.org/sads-conditions/long-qt-syndrome/

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