“We celebrate Graeme every day in our family by persevering and sticking together, against all odds.”

Deby’s Story

I was 28 when I was diagnosed with LQTS in 1989. In 2000, we learned from my Electrophysiologist, Dr. Blair Halperin that we could do genetic testing for my children through Dr. Michael Ackerman with the Mayo Clinic. It was very complicated at that time, and costly. And just one month after we initiated genetic testing, my son, Graeme, died at 12 years old after jumping into a pool and experiencing a Sudden Cardiac Arrest. We were heartbroken.

Dr. Ackerman got very involved in our story and immediately got in touch with our family to see if we wanted to test our other two children. They were able to determine that Graeme had LQTS, as well as my daughter Marissa. My oldest son did not. We became very involved with the SADS Foundation, especially around the issue of defibrillator access. At that time, defibrillators were seen as something that could hurt someone, as opposed to helping them. We advocated around the Portland area and throughout the state of Oregon for AED use in public places. At that time, AED access was nonexistent except in healthcare settings or with EMS staff or police officers. The SADS Foundation was really part and parcel of spreading the message that AEDs are lifesaving devices –like fire extinguishers. It was an uphill battle. The school district officials would NOT let us put one at Marissa’s elementary school because they thought that the Good Samaritan Law wouldn’t cover liability if someone was inadvertently shocked, which could not happen with these devices.

It’s easy to feel paralyzed by this kind of diagnosis. You can’t see it, you can’t look at it, and you can’t tell someone has it by looking at them. If you’ve just been diagnosed, read as much as you can, and go to SADS.org to educate yourself so you can find the right medications and care. And please get treated as soon as you can, whether it’s through medication or an ICD. ICDs do feel terrible when they fire, and can be scary, but they save lives.

It’s so hard to lose a child, and that pain never goes away. The best thing we could do to honor Graeme was to persevere as a family, and come together to advocate. My parents just passed away, and the SADS Foundation was important to them as they knew it as a great tool for families living with or new to LQTS. Their donation to SADS was such a wonderful way to share their care and concern for all families living with life threatening arrhythmias. The SADS Foundation has been helpful in helping us know what drugs we can take, and which we should avoid, with LQTS. They’ve helped us in spreading awareness and understanding. If my husband and I couldn’t explain something, or answer a question, we’d always point to the SADS website as a great resource!

We have a little baby who’s just joined our life – my granddaughter. And there’s so much less fear attached to LQTS for her. There’s been so much progress, thanks to organizations like the SADS Foundation.

“LQTS doesn’t define me, but I do need to be aware of it – take ownership of that part of myself, take my medication, and educate others.”

Marissa’s Story

Right after my mom had my brother, she found out she had LQTS. That was about 30 years ago – and not much was known about it at the time. Growing up, we went through testing and EKGs, but weren’t diagnosed. After my brother passed away at the age of 12, we went through early genetic testing, and I learned that me and my brother, Graeme, who passed away, had LQTS. My older brother does not.

Once my family found out I had LQTS, it was a race to figure out how to manage it, especially since there was a lot that wasn’t known. My parents found the SADS Foundation, and that was the beginning of them learning about this condition. I was really into sports at the time – soccer and gymnastics – and my parents said that I wouldn’t be able to continue playing, and that we’d need to pivot, adjust, and find something else for me to focus on. That was really difficult for me, but my parents were amazing at saying, okay, sports are a “no”, but look at all these other things that are a “yes”!

Our beautiful baby girl, Saylor, was born three weeks ago and has LQTS. Pregnancy was challenging with LQTS – they wanted to take me off my beta blocker, but I knew that my cardiologist would say “no way,” and that I needed to be a healthy mom to have a healthy baby.

I stayed on my beta blocker, and they put me with a high-risk pregnancy doctor just to be safe. There was pushback throughout, and the biggest challenge for both me and my husband was advocating for ourselves and our baby, and feeling heard. Talking about LQTS was a constant conversation we had with our doctors. That’s the biggest piece of advice I have for other pregnant moms with a SADS condition – advocate for yourself and your baby, communicate how you’re feeling and what you know about your condition, connect your doctors with each other, and have a plan for post-delivery if needed.

Losing my brother, and seeing my mom have multiple cardiac arrests, I knew I needed to respect that part of me. LQTS doesn’t define me, but I do need to be aware of it – take ownership of that part of myself, take my medication, and educate others. If you have LQTS, I just want to say: take your medication, listen to your doctors, because you being here is so important.

We just got back last week from an appointment with my childhood pediatric electrophysiologist, who’s now Saylor’s pediatric electrophysiologist. Things have changed so much – she can play soccer and do sports.  I felt hopeful coming out of that. If we knew back then what we know today about LQTS, we might have been able to save my brother.