My name is Paul Clabburn. With my late wife, Claire Prosser, we lived in west London and had two children, Tom and Ellen. Tom was the elder. He was 14 when he died in his sleep on October 5, 2007. He had been healthy. Except he wasn’t.

I started writing this on what would have been Tom’s 30th birthday, November 27, 2022. I didn’t get very far. Spelling out the word t-h-i-r-t-y brought me to a halt. Of course, I’d known it would be a “big” birthday, one that meant Tom had been gone for longer than he had been with me. Yet I hadn’t known how I’d feel.

I couldn’t help noticing how time blunted recollection. The loss of Tom’s mum in 2014, also from a heart condition, further stripped me of someone who could share and reinforce memories. The years have led me to a place where, although I remember Tom every day, I no longer “hear” him in the way I once did. My mind’s eye sees a teenager on the cusp of adulthood, not a thirty-year-old man. What would he look like, what would he be doing? How can I possibly have any idea?

Despite that, Tom is never far away. My daughter can surprise me with something new about her brother. Friends who knew Tom at primary and secondary school still tell stories about him that I haven’t heard before. I add these to the memories I have, hoard them for the gold they are. Tom remains a constant in my life.

The other constant since his death has been CRY. I vividly recall CRY’s founder, Alison Cox, telephoning Claire to tell her she had found “the right place.” We both had. CRY has provided support and understanding from the very earliest days to the present. It gave us purpose and helped us turn outwards to the world when we might have turned in upon ourselves. It gave us the belief that we might be able to prevent the horror that had befallen us from being inflicted upon others.

Since 2008, Tom’s Memorial Fund has sponsored the screenings of more than 3,300 young people. We’ve also funded equipment and research. We couldn’t do that without the generosity of the local community. We’ve never had a business plan, we’ve always relied on individual donations. Hopefully, with Ellen’s continued help, we’ll keep that going. I remarried in 2020 and now live in Chichester. My wife, Morna, supports our endeavours, joining us each year on the Heart of London Bridges walk.

I struggle to understand why other young lives are still being lost to undiagnosed heart conditions. On CRY’s figures, more than eleven thousand young people have died since Tom. The majority could have been saved, could have thrived. What more evidence does the UK National Screening Committee need to adopt a national heart screening programme for young people?