World Heart Day: Teen cardiac arrest survivor meets scientist leading race for a cure
A video has captured the heartwarming moment a teenage cardiac arrest survivor with a rare genetic heart condition met the eminent scientist leading the race to find a lifesaving cure.
Jack Taylor, from Nottingham, was just 17 when he went into cardiac arrest while playing basketball in February 2024. A first aider on site saved his life by performing CPR, but in hospital he was given a very low chance of survival and spent 35 days on life support.
Recovery took many months and included open heart surgery, but two years on, the 19-year-old is studying software engineering at Nottingham Trent University. He now lives with an internal defibrillator known as an implantable cardioverter defibrillator (ICD) that can monitor and treat abnormal heart rhythms.
The cause of his cardiac arrest was a rare inherited heart condition called hypertrophic cardiomyopathy (HCM). Genetic testing found that his dad and twin brother also have the same gene variant. There is currently no cure, but one could be in sight.
In 2022, BHF Professor Hugh Watkins and Professor Christine Seidman at Harvard University were jointly awarded £30m for the CureHeart project to find and develop cures for inherited heart muscle diseases like Jack’s.
This summer, Jack got to meet Professor Watkins at Prof Watkins’ lab at the University of Oxford and learn about the search for a cure for the condition which changed his life overnight.
Personal connection
In a touching moment captured on film to mark World Heart Day (September 29), Professor Watkins realised he was the first to discover the HCM gene that causes Jack’s heart condition called MYBPC3.
This discovery was an important early step in our understanding of the genetic causes of HCM, and Professor Watkins and his team went on to open the UK’s first genetic testing service for the condition. These findings helped kickstart decades of research that could one day lead to better tests and treatments, and now even a cure, for this disease.
Professor Watkins told Jack: “Your mum thought it would be helpful for me to see the gene change you have. I did a double take, because it’s very close to home to me as a scientist.
“[The gene] is one that I discovered when I was early in my research career in 1995, and I’ve got scientists in the lab working on the exact gene change that you have and are trying to find ways to fix it.”
Jack said: “Hearing about this research has made me not only grateful but also hopeful. Hopefully one day I’ll be cured of this, but more importantly, the next generation. Hopefully they won’t have to go through what I’ve gone through.”
He added: “Meeting someone who has dedicated their entire career to understanding and treating conditions like mine is pretty amazing.
“What makes it even more incredible is learning that Professor Watkins helped discover the exact same gene that’s affected me and my family. The connection is very personal.”
Hope for a cure
The CureHeart team are developing revolutionary gene therapy technologies that could edit or silence the faulty genes that cause deadly inherited heart muscle diseases. The challenge is that each gene requires a different treatment.
Professor Watkins said: “It’s really special meeting Jack. I meet many patients with inherited heart conditions, but Jack’s story is one of the most extraordinary.
“Our aim with CureHeart is edit or silence a faulty gene that produces a faulty protein. But there are other genes, and that includes the one Jack, his dad and his brother have, where there’s a missing copy and we have to make the healthy copy work harder and replace the missing protein to get it up to the normal level.”
He added: “We always worry that [a cure] will take longer, or there will be more obstacles, than we expect, and thank goodness we have stable long-term funding from the British Heart Foundation because we have to get over these hurdles to show a treatment is possible before you can expect a company to invest and make a medicine.”
Prof Watkins commented further: "We’re moving closer to testing new treatment approaches in patients. By the time Jack has kids, say they inherit the gene change, I really hope by that time we’ll have found a cure.”