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Jacob Collinson

Jill Collinson

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

We had no family history – this came out of the blue. Jake started having events at 7. The first one he had was when he was dropped off at a skating rink for a birthday party, and we got a phone call that he’d had a head injury. They did scans and cleared him at the hospital. He then had two events shortly after – one riding his bike, and one running up the stairs after recess during Bible School. That’s when they did more extensive medical testing, and gave him a diagnosis of seizure disorder.

He had several events over the years – in the swimming pool, on the soccer field, while running laps in PE, while playing games at a church event – and I spent all those years studying seizures, going to symposiums, and educating myself. It bothered me that there were aspects that didn’t quite fit the definition of seizure disorder, like how long the episodes were, or that they always happened after physical activity. We talked with his neurologist, who said it was a coincidence – but I thought it was a pattern.

Our breakthrough happened when Jake was 20 years old, working at a theater, and had a “seizure” in the lobby. An off-duty police officer – Richard Salgado from the Hillsborough County Sheriff’s Office in Tampa – found him lying face down and began CPR. The fact that a stranger found him made all the difference – we would have thought it was a seizure, but the officer through it was his heart. He was taken to St. Joseph’s Hospital in Tampa and intubated, and we were told he’d been found in Sudden Cardiac Arrest.

They asked if we could implant an ICD in him, and as we read through the paperwork we saw he wouldn’t be able to have MRIs, and because we thought he had seizure disorder, we didn’t want that. The doctor on call said that if it happened again, and he didn’t have a device, he wouldn’t have a brain to worry about. We consented and the ICD was implanted.

He had an event soon after, and came to right away because the ICD fired. They did a download of the data and told us they suspected it was either LQTS or CPVT. Genetic testing eventually confirmed that it was CPVT. They put him on medications and checked the rest of the family. My husband and I don’t have it – he’s de novo.

His cardiologist, Dr. James Irwin of BayCare Medical Group, said it was his opinion that Jake never had a seizure – and we were shocked. We’d been in treatment for 14 years. I was upset – I asked how that could have happened. The cardiologist said he just wasn’t examined at the right moment. Now he leads a normal life and has learned to live with CPVT.

Jacob Collinson

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

I was diagnosed with epilepsy for a long time, which is clearly not what I had. Strobe lights didn’t affect me, and tests never really showed anything. It was a bit of a journey to diagnosis, and it took a while to find the right medications and everything. We originally thought it was LQTS and I was on different meds while we were waiting for our DNA results – it was rough. I would irritate paramedics when I was having events, because I wouldn’t want to go to the hospital – because my heartbeat would be stable and my arrhythmias would disappear.

Now I work in IT – general support, and I’m about to move into security. I don’t play sports like I’m used to. Some days aren’t as good as others, but overall, I’m doing fine.