Can you tell me a little bit about your family’s SADS journey?

My daughter, Karly, had her first Sudden Cardiac Arrest at the age of ten. She was a competitive soccer player and dancer at the time, and was at a soccer tournament up at Lake Tahoe. In between games, she was jumping on a trampoline bungee cord feature, and had her first event while she was playing on the trampoline. We didn’t know what had happened. After getting her unharnessed, we couldn’t find her pulse and she was not really breathing. Her father and I performed CPR, she was probably unresponsive for five minutes. That was her first missed diagnosis, EKG’s and Echo’s were normal and it was concluded she’d just had a vasovagal (fainting) episode.

She went untreated for a few years because of that missed diagnosis, and when she was thirteen – three years later – she had an event in a swimming pool. She blacked out partially, and pulled herself out of the pool – she was okay and didn’t require CPR, but she said it felt like the same thing that had happened to her at ten. We thought that it was vasovagal again – since she hadn’t eaten, and was playing hard.

A week later, she was going out on stage at a dance recital rehearsal, and she collapsed and was completely unconscious. We did CPR again and she was admitted to the hospital, where seizures were suspected. We had to advocate for cardiology referrals and it took a few weeks to find an electrophysiologist – who ultimately did a treadmill test to diagnose her with CPVT. Due to CPVT being so rare, the electrophysiologist recommended that we see an expert. After researching CPVT, we found the SADS Foundation and Dr. Michael Ackerman, who Karly saw in February of 2020. Dr. Ackerman put her on a treatment protocol, and outlined which physical activities she could and couldn’t do.

It was a relief connecting with Dr. Ackerman and the SADS Foundation to get the resources we needed. We shared the SADS Care Plans with her school for the nurses and teachers, and it helped our schools realize they needed to have CPR-trained staff and functioning AEDs.

What are some of the biggest challenges Carly and your family faced after diagnosis?

Karly had to quit her soccer team, which her dad was active in coaching – that was a grief process for both of them. She also gave up competitive dance. Some of the things we used to do as a family have changed – like water sports and hiking in remote locations. There was a big adjustment process and a lot of grief about giving up the things she loved.

She’s tapped into other interests, and does Pilates now as her approved exercise. She’s found an interest in cooking – she found recipes, shopped and prepared meals all through COVID and now has taken multiple culinary classes at school. Karly also has a job as a line cook at the local pub; she’s the only teenager with the role. She has become our family’s personal chef and cooks all the time.

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

I recommend jumping into the SADS Foundation and exploring all their resources, and joining groups on Facebook for the conditions. Everything we found started with SADS, and the SADS teen chat, which helped her connect to a boy her age with CPVT and find peer support.

Can you tell me a bit about the awareness events your family is holding this year?

We’re really involved with the youth sports leagues in our area (Karly’s little brother is in little league). Our league is purchasing AEDs, so at the beginning of February, we helped start the AED program by teaching bystander CPR, and familiarizing others with how to use AEDs. Karly assisted with the AED training and passing out SADS brochures.

Later in the month, we attended a community health fair. Karly handed out bracelets and brochures, and talked about AED awareness and how to use them, and even shared her story a few times. In March, during the opening day for little league, Karly will also be handing out bracelets, brochures and talking about AED awareness.

Later in the year, we’re going to be doing a pub crawl – including the pub Karly works at – to raise awareness about SADS conditions and funds for SADS, and Karly is going to speak about her experiences. We have a unique opportunity right now with SCA in the news to capture people’s attention and make sure they learn these critical skills to help save a life.

Are you interested in making a difference by spreading awareness? Learn how to become a SADS awareness volunteer here.