Tom and his daughter Meg

Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today?

I’m the first one in my family to have this condition that we know of. I call myself the “mutant” – the one that first had the gene.

As a kid, I was very active and sports-driven, and I participated in every single sport. In 1990, when I was nine years old, I passed out while playing basketball. They checked my head – did EEGs – and everything came back normal.

The week after that, I ran a 10K in Fort Worth, Texas, and was completely fine. Then I played another game of basketball, and passed out again. Around that time, the college basketball player Hank Gathers died – and they found out that his death was due to a heart condition. When my mom saw that, she wanted to have my heart checked.

We spent several years doing research and trying to figure it out. Over the course of the 3rd grade, I took lots of different medications, did a treadmill test, had heart catheters inserted, and went through other medical procedures. These heart arrhythmia conditions weren’t well known at the time. At 10, I had a pacemaker put in and found a good combination of medicines.

About five years later, my pacemaker was replaced with an ICD/pacemaker combination. I started having more issues playing sports – I had six or seven episodes where the ICD went into a shock storm. I was awake for all the shocks. I’ve had 60-70 total shocks throughout my life, including twice in a pool, once while climbing a fence, two or three during hockey, two during basketball – and a Sudden Cardiac Arrest while playing on a trampoline in 1997. I was on a vent for 24 hours.

In high school and college, I started to learn my body’s limits, and how to manage my condition. In 2004 I was diagnosed with CPVT. I have two daughters – one of whom has CPVT too. My youngest child, Meg, who is seven, passed out in 2021 at field day – she didn’t tell me at first, and passed out again when she was scared by some boys in her class. She’s now diagnosed and treated for CPVT as well.

What advice would you give to someone who was newly diagnosed with a SADS condition?

Stay positive – every day we’re learning more and more about these conditions, and many people who have them live normal lives. That’s the most positive thing to get from this.

Even with restrictions, there are so many things you can do. As soon as I was diagnosed, my parents got me into golf, and over the past 32 years I’ve been playing and gotten pretty decent. I’m looking forward to sharing it with my daughter Meg.

Even though I’ve been shocked multiple times, it hasn’t slowed me down.

If you or your child has symptoms of a SADS conditions, please reach out to us – we can help!