It was in July 2019 that 22 year old Toby (or Tobe as he was known to friends and family) was found dead on his bedroom floor by his mother – Sam Richards. At the time of death he was fitter and healthier than he’d ever been. His death was registered as SADS – Sudden Arrhythmic Death Syndrome, and as the condition is usually inherited, Sam went with her younger son to get tested.
That tragedy brought together a team of people and specialists who decided to form a not-for-profit organisation that could help raise awareness, offer cardiac screenings, training and risk assessments to individuals and organisations, which in turn could be expanded into local communities.
Our ultimate aim is to help prevent the premature and sudden deaths of other young people who should still be alive, like Toby.
Sam says: “Many people who find themselves in similar situations search for some kind of meaning, and some find it in running marathons or organizing find-raising. My partner and I work as television producers, and so our instinct was to make a programme to raise awareness of this syndrome. In the November following Tobe’s death we took our idea to the BBC and made a film for BBC3. It follows a wonderful and brave young man, Patrick Mead, and his family as they go through the process of trying to understand how Patrick’s sister Lauren died in her sleep. Her death was also recorded as a SADS death and the Meads, like our family, were stricken and uncomprehending – desperate to understand how such a perfectly healthy young adult could simply die without warning?
“Throughout our experience we have met an incredible team of experts and together we have created a not for profit organisation ToBe–Heartsafe inspired by the families, and my son Tobes. We want to increase awareness in schools and sports clubs, make screenings more widely available and train more people in life-saving skills.” Sam Richards
