Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.

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    • After a Young Sudden Cardiac Death
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St Piran’s Day at St Austell RFC in memory of Thomas Demaine and Debbie Rendle

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When we lost our son Thomas 18 months ago in a supposed road traffic accident we were bereft. Being a family that has spent a lot of time playing, coaching and managing rugby in the community, our rugby family were amazing and folded their arms around us in strength. Some months later we discovered that Tom had left ventricular hypertrophy and the circumstances of his RTA suggested that he had almost certainly suffered a fatal dysrhythmia causing his accident. My husband Andy – a kidney transplant recipient of 43 years – and I had just retired from the Peninsula Medical School having completed over 30 years of clinical care and research into the causes of diabetes and its complications.

So it made sense to utilise the resources of the rugby community when we held a ladies day at the club we belong to, St Austell RFC. Having been involved in women’s and girls’ rugby for 17 years following our daughter Lucy from u7s rugby to a full England cap in 2016, ladies day meant to us a celebration of all that is good in women’s and girls’ rugby. The plans of a friendly ladies match grew to a full blown festival of girls’ rugby and an invitational charity match for the ladies. A young girl at the club asked if she could help raise money for diabetes as she had just developed type 1 diabetes herself. We decided to extend the remit of the day to CRY and JDRF – that seemed to make sense, after all – and advertised the event some months in advance to ‘save the date’.

 

We could not have predicted that the lovely Sylvia and Leon Pezzack would, by chance, be alerted to this event when their grand-daughter Lucy Rendle, now playing junior girls’ rugby in the new team at Penzance Newlyn RFC, picked up my adverts on face book. Lucy’s mother, Debbie Rendle, had died a sudden cardiac death 10 years previously due to long QT Syndrome, I learned when Sylvia made contact with me. We were on the brink of setting up a CRY Memorial fund for Thomas, but Sylvia told me that she was already planning for cardiac screening to take place in St Austell in 2018. Could she help us and could our donations contribute to that? The answer was of course, yes. This lovely lady has raised £42,000 over the last 10 years – another inspiration!

So suddenly we had 150 young ‘ladies’ (aged 12-53y) coming to play rugby from all over Cornwall and our guests from Devon. Two big charities were involved and we had 3 main aims: to raise awareness of women and girls rugby; to raise awareness of two conditions that hit children and young people far too often and affected members of our club and community directly; and to raise funds for the two charities. On top of that we planned to host it right in the middle of the Women’s Rugby 6 Nations and in the Women’s Rugby World Cup year, so it was clear that these inspirational rugby ladies had to make their entrance.

So, the celebration became enhanced by the presence of some of the England Red Roses who came to support the event. Amber Reed (England, Bristol), Jo Yapp (England’s u20’s head coach), Poppy Leitch (England & U20’s, Bristol), Michaella Roberts (U20’s, Cornwall, Plymouth Albion) as well as England and Academy players Lucy Demaine, Clara Nielson, Alex Powell, Kate Alder and Lauren Chenoweth who gave up their time to support and talk to and inspire girls and ladies. Alex Powell lost her mum to HOCM a couple of years ago and is in fact the reason we had heard of CRY.

We were sorry to miss our guests Sara Cox and Debbie Fleming who had been called up to referee and play at the Vegas 7’s but celebrated their success. All of our VIPs started their rugby careers in the SW of England, as did our all-female refereeing team of Jess Veacock (Devon), Cloe Waterfield (Plymouth) who also has type 1 diabetes – Lucy Smith (Devon) and Hannah Bryan (Devon).

Generous donations of several items of England Women’s kit including a Rio Olympic signed T-shirt, as well as England and Exeter Chiefs kit from Henry Slade – also living with Type 1 Diabetes – and a signed Twickenham programme of England Women’s recent game against Italy women, kindly donated by Amber Reed, along with raffles, sale of programmes, cakes and food, resulted in £1,050 being taken for the two charities. JDRF supports research into type 1 diabetes and CRY (Cardiac Risk in the Young) into cardiac screening which will be made more possible in the St Austell area in 2018 due to donations to the 2 CRY Memorial funds – Debbie Rendle and Thomas Demaine.

St Austell RFC and the rugby family eschewed the weather and pulled together to raise awareness of Women’s and Girls’ rugby in this W6N season and WRWC year; and awareness and money for two great charities which aim to research two conditions which hit far too many young people.

Girls represented Cornish teams from St Austell, Camborne, Helston, Penryn, Penzance Newlyn, Liskeard Looe, Launceston and Newquay as well as Devon visitors from Paignton, Newton Abbot and Plymstock Oaks rugby clubs.

In the rugby world we often say in rugby that ‘Rugby is the winner’ rather than worrying about the scorelines, when we are just happy with watching or playing the game. In this case, not only was Rugby the winner, but so were CRY and JDRF. As well as the money, hopefully 150 ‘girls’ and their friends and families are now more aware of these conditions that kill or serious affect young people and the hope that more cardiac screening can take place in 2018 in Cornwall will be realised.

Ann Demaine

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Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.

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