A Friend's Grief following a young sudden cardiac death

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A Friend’s Grief

following a young sudden cardiac death

Offering help and support to affected familie s @CRY_UK CardiacRiskintheYoung www.c-r-y.org.uk Reg Charity No. 1050845

Editor Alison Cox MBE, CRY Founder Sub-Editor Lily Burke, CRY Bereavement Support Programme Manager Nat Jenkins, CRY Communications and Publications Manager Produced by Cardiac Risk in the Young (CRY) Unit 1140B The Axis Centre, Cleeve Road, Leatherhead, Surrey, KT22 7RD Web: www.c-r-y.org.uk Phone: 01737 363222 Email: cry@c-r-y.org.uk First edition - 2017

About Cardiac Risk in the Young Since its formation in 1995, Cardiac Risk in the Young (CRY) has been working to reduce the frequency of young sudden cardiac death (YSCD). CRY supports young people diagnosed with potentially life-threatening cardiac conditions and offers bereavement support to families affected by YSCD. CRY promotes and develops heart screening programmes and funds medical research. CRY publishes and distributes medical information written by leading cardiologists for the general public. CRY funds specialist referral, screening and cardiac pathology services at leading UK hospitals.

CRY’s Vision

Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families. Information about the charity can be found here: www.c-r-y.org.uk CRY keeps supporters updated with our latest news via a monthly enewsletter. To sign up to receive our enewsletter please visit www.c-r-y.org.uk/subscribe. Follow CRY on social media for all latest news, campaigns and to help CRY raise awareness by sharing, retweeting and liking our posts. @CRY_UK CardiacRiskintheYoung cardiacriskintheyoung #cardiacriskintheyoung Visit CRY’s website www.c-r-y.org.uk for information on upcoming support and fundraising events, campaigns to help raise awareness and other opportunities to support CRY. CRY also provides information and support for young people diagnosed with cardiac condtions. For more information about how CRY can help please visit www.myheart.org.uk © Cardiac Risk in the Young


Introduction by John Inverdale Foreword by Alison Cox MBE Friends’ Stories Charlotte’s Story by Danielle Burdett; Emma Purkiss Aaron’s Story by Ben Taylor Dingwall; Mike Lee Harry’s Story by Jack Doyle; Joel Mellmann David’s Story by Jack Trott Thomas’s Story by Thomas Blundell; Tom Crook; Joseph O’Neill Daniel’s Story by Steven Bailey; Dave Hickson; Nathan Shaw Alex’s Story by Eleanor Cornwall; Aneesah Kabba-Kamara; Rebecca Say Robert’s Story by Nathan Annakin Jemima’s Story by Coral Briggs; Jessica Spokes Sam’s Story by Dani West

How to get your heart checked Walks in memory Facebook support group #CRY4Friends

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© Cardiac Risk in the Young


Introduction by John Inverdale On the very day that I was asked to write this introduction, I went to the pub to meet a couple of friends. There are two options when going to this particular pub. Take the car, or justify that second drink by walking along the river. I walked, as though any justification was really needed. They’d walked too. A virtuous threesome. Sadly these days, you get used to seeing bouquets at various roadsides lamenting a life lost too young, either recklessly or accidentally, by a speeding car. You don’t however expect to see a similar memorial on the river bank. But there it was, by the boat club, barely 20 metres from the pub, flowers and candles and candles and flowers mourning the loss of a teenage girl, a ferociously keen rower who was out on the water last year, one moment pounding up and down the Thames, and the next, unconscious and shortly afterwards, another tragic statistic of someone gone far too soon. I got to the pub and told my mates. They said they’d read all about it in both the local and national press, and so we spent a large part of the evening talking about the fragility of life, how precious it is, and the work that CRY does. To be honest, they didn’t know much about CRY before the evening began, but they sure do now. Every case is different, but every case is the same. I was playing rugby 30 years ago when a good friend collapsed and died alongside me. One week on the team sheet, the next another unexplained and terrible story. My golfing mates knew him too. My daughter played hockey at school with a girl who was destined for great things - she might well have been part of the golden Rio Olympic set-up - but one night she went to bed and just never woke up. And so it goes. You’re reading this because you understand. You understand what it’s like to have someone who is an integral part of your life be there one moment and not the next. The anger and the hurt. The bewilderment and the sense of injustice. And more than anything the sense of unreality. Someone who was so healthy, so vibrant and dynamic and so alive. How? Why? That’s where CRY comes in. A support mechanism, but also an organisation to drive the research that is needed to try to reduce the number of these tragedies. This booklet tells so many tales, but in the end, it tells just one. A tale of loss of a friend, but more importantly of love. As we looked out across the river on that kind of summer’s evening when the shadows dance on the water as the sun goes down, we reflected on lives, that while far too short, will forever leave lasting and indelible memories. 2 © Cardiac Risk in the Young

Foreword by Alison Cox MBE This powerful and deeply sensitive booklet articulating the thoughts and feelings of the sudden death of a fit and healthy special friend explains the ferocity of the impact of the loss. I am hopeful it will help others affected understand both their own response to such a life-changing event if they have experienced something similar, as well as friends and their families to become more aware of the searing grief that the authors have so brilliantly expressed and that, many years later, they are still fighting to come to terms with. We are all born into our relationships but have the freedom to choose our friends. There is a subsequent independence in friendship and – especially for those that have been friends since childhood – a raft of poignant memories created especially during maturity. Adolescence can be a rocky ride and having a trusted friend to discuss new experiences with and confront difficult decisions that need to be made can greatly reduce anxiety. Having a special friend to talk to helps to stabilise the fast-changing world that seems to lurch around them which often affects their confidence and leaves them vulnerable. A good friend can provide a haven of security and suddenly losing them there can have a catastrophic effect on a young person. They express their bewilderment as the messages swirled in the frightening aftermath of receiving the news. Where; when; how; what? “It affects the young, fit and healthy. The heart just stops. It’s called sudden death syndrome.” They talk of their feelings about the worst day of their lives – the dreaded funeral – which brought family and friends together. Their fear that they would not cope and would let everyone down. The uplifting wake when they met so many others with memories to share, and pictures to show, as well as old friends with whom they resurrected contact. Their honour and pride at being chosen to be involved in the ceremony in front of the massive number of people who came to say their own goodbye and the anxiety that they would fail the family they so desperately wanted to support. The authors emphasise how much talking helps address what happened and their surprise and delight when they found that parents wanted to retain contact. How much they value the unique bond that develops which facilitates grieving – both wanting to share highlights, photos, and events. Difficult times and great times. The forgetting and still calling/texting before remembering… The huge impact of the tragedy and battling with the gap that their ‘forever’ friend has left. Trying to adapt to the reconstruction of their lives and managing without them by their side for the mundanities of life. Now living for the day and taking nothing for granted they find that they value relationships more. Reminiscing on their own, with friends, they enjoy looking at old pictures; digging out old messages. They grieve, often together, that there will be no more evenings in the pub or spontaneous get togethers; no more late night/early morning calls; no more texting just to catch up. No more, dear friend, no more. © Cardiac Risk in the Young 3

Charlotte’s Story On the 23rd of November 2014, our lives changed forever when we lost our dear friend, Charlotte. She went to sleep on the Saturday night after texting our group chat, asking if anyone wanted an impromptu ‘girls’ night out’. Unfortunately, we all had plans. We forever wonder if things would have been different, had we all gone out. I was 23 and relaxing with my boyfriend and friends in my uni house when I was told. It left me in complete shock, in denial with no comprehension of what had happened and how. The sadness was unbearable; I couldn’t sleep. It was impossible to believe that such a vibrant young person was no longer there anymore. Charlotte would always be making us laugh, whether it was by being the party starter on nights out, endless hiccups, sneezing fits, falling off chairs or exiting zip wires in a crash finish. Charlotte had been such a colourful part of our lives, always thinking of things we could do all together and adventures we could go on. Charlotte loved to host parties and loved anything fancy dress. We think about her every day and reminisce together, our special memories of her and the love we have for her. As a close friendship group, this devastating tragedy has bought us closer together, and also closer to Charlotte’s family, who we hadn’t known that well before. We now only have our photos and memories to cherish. It is strange that Charlotte isn’t here. She used to get so excited talking about the future. We love getting together, often for CRY fundraising events which gives us the chance to share memories about how she made us laugh. Charlotte was one of the best friends you could ask for. She would do anything for you – protect you, care for you, and lighten the mood in any uncomfortable situation, whether it was appropriate or not! Char was so loyal, she always looked out for her friends and was there when you needed her! Although our lives have changed so much in the last few years, she is still a huge part of us all. We are devastated that she is no longer here but her beautiful, kind, generous, charismatic personality lives on in our hearts and in the stars. Charlotte is truly missed by everyone but her incredible spirit lives on, through everything we do together. She was so beautiful inside and out. There never will be anyone else just like her and our lives will be so different without her. Her loss brings an end to so many plans and dreams. Charlotte, we love you, always. Forever Young Charlotte Adams xxx. by Danielle Burdett on behalf of Danielle, Suzanne Broadbridge, Jade Brooke, Katie Keteleers and Georgina Butcher 4 © Cardiac Risk in the Young

Bang, crash, wallop! Charlotte came crashing through the doors with the post trolley – she always liked to make an entrance when arriving for work! I worked with Charlotte for seven months, she was my partner in crime in the Admin Department. She was a breath of fresh air. She had such an impact on my life and I miss her terribly even after nearly three years. Her zest for living was inspirational and she has left a massive imprint on my heart. Charlotte joined Birkett Long solicitors in April 2014 and made an impression on everyone from day one. The first thing people often say to us when remembering her is her massive smile that filled every part of her face. She always had us, and the rest of our team, in fits of giggles with her hilarious personality and cheerful nature. The time we had with her was extremely entertaining. Charlotte’s dad contacted me to break the dreadful news on the Monday morning. I then phoned Laura and the questions of “What? How? Why?” were the only words we could say. On the day we found out that Charlotte had passed away everything changed for us, as it did for everyone who was lucky enough to know her. Emma broke the news to our Team Leader who then had to break it to the rest of our team. We stood in silence and as it slowly began to register what was being said, the tears started to fall. How was it possible that such an incredibly energetic, full of life young woman could suddenly just die. It was inconceivable. Over the next couple of weeks the shock of Charlotte’s death began to sink in and the tears flowed frequently. Leading up to her funeral, Charlotte’s family had asked us to wear something pink on the day. We created pink ribbon flowers for us all; we still have them as we like to wear them on her birthday to let her know she is not forgotten and is still so close to our hearts. Her funeral was like no other funeral we had been to – it was a celebration of her life, filled with her favourite music, stories and pictures. We got to meet Charlotte’s family and when we hugged her mum, Kate, it felt like we had known her for as long as we had known Charlotte, thanks to the stories she used to tell us every day. People like Charlotte change your life. Her bubbly and cheeky personality left such a mark in our hearts. From singing Sam Smith songs all day to being mischievous around the office, no two days were the same with Charlotte around. The last time we saw her she was walking out of the office door with a big grin on her face after making a standard cheeky comment to us all. Charlotte’s sense of fun would always lighten the mood and the impact of her no longer being there has left a massive, gaping hole in our lives. We love meeting up with her family and so enjoy having the opportunity to talk about her and share our memories. Helping to raise money for Cardiac Risk in the Young brings us all together and has given us something to focus on. We love you, Charlotte. Rest in Peace. by Emma Purkiss, on behalf of Emma and Laura Hook © Cardiac Risk in the Young 5

Aaron’s Story I was 25 and nothing could have prepared me for what I was about to hear. I found myself in a total state of shock. I didn’t know what to say or do. I couldn’t comprehend what was being said to me. I was numb and oblivious to the world passing by me. I was, and still am, completely devastated. Everyone hurt in our social group, overwhelmed with grief. We rallied together to support each other and couldn’t accept that Aaron, everyone’s best mate, wasn’t here anymore. We had lived together at university and I’d often travelled to his home, so I knew Debs and Gary (his parents) very well. The pain I felt was unbearable and I couldn’t relate to theirs. All I know is that they are the strongest, most amazing people that I’ve ever had the privilege of calling my friends. In the lead-up to the funeral, I kept thinking it was a bad dream. How can this guy I speak to everyday not be here anymore? Several friends were asked to share some memories and insight. I didn’t know how I was going to get through my talk and was shaking, overwhelmed with emotion. Seeing the strength others had found gave me the motivation I needed to get through it for Aaron, talking about the amazing times we had together, our stupid conversations, how bad he took losing at Pro Evo, and his tolerance of me listening to metal music; something I knew he had zero interest in. But he still asked about it. That was Aaron. That was the story I told. Nothing broke my heart more that day than seeing Aaron’s family. I couldn’t look them in the face. The pain in their eyes crippled me and nothing I could do or say would make any difference. I felt selfish for being upset, knowing that what I was going through wasn’t close to the grief they felt. I didn’t know what to do. I was empty. I returned to London immediately in a world of disbelief. I couldn’t accept what I had just experienced. It was a blur. Had I really just buried my best friend? Losing Aaron has left a void that I will never fill. We spent every day of university together, spoke every day after leaving, and saw each other regularly despite living so far away. He knew everything about me. We would call each other, drunk, on nights out, shouting some of our stupid catchphrases. It pains me not getting those calls anymore. It torments me that a few days before he passed away he called around 3am. I was asleep but woke to my phone ringing. I didn’t answer because I had to be up early and knew we’d be on the phone for ages. It haunts me. I wish I’d answered and had that conversation with him. The loss of Aaron has pulled together friends and family alike. Through such a tragic set of circumstances, a support network has emerged who invite each other to weddings, birthdays, christenings and parties. Friends who rally round to do charity work supporting Debs in her amazing fund-raising efforts. Friends who reminisce, talk and laugh about all the amazing times we had with Aaron. Grief never goes away. The pain is still there. Time only makes things easier, but we never forget. Aaron was special. He was everyone’s friend. He had time for us all and would always be there if you needed him. There isn’t a day that goes by where I don’t think about him. I miss him dearly and would give anything to have him back in my life. I love him and could never forget him.

by Ben Taylor Dingwall 6 © Cardiac Risk in the Young

The break in his voice when Jadie called told me to brace myself. He said “we’ve lost him... he’s gone”. My heart began racing and the rest of the call blurred as confusion and disbelief raged through me after being told that one of my best friends had just passed away. Suddenly the loudest area of New York, where we were on holiday, became the most silent. I told Oli and we walked to our hotel in shocked silence. 5 years of memories were running through my head within seconds of that phone call. Our first encounter at our university halls, graduation, the holidays, his last text 2 nights ago. The impact of this tragedy was devastating. I refused to come to terms with it, thinking I would never hear his laugh again, never get a call from him again. I’d lost someone so special, so similar in mindset, values, drive and most importantly sense of humour. People like Aaron are a rarity and the impact was felt by our friends and our friends’ families. Shock, sadness and the feeling of a huge gaping hole left in the life of everybody who knew him. I texted his mum Debbie and then called my mum, sobbing down the phone that I hadn’t been there for him. Later I called his home and his dad, Gary, answered. We cried together, trying unsuccessfully to make sense of it. Once home I sought comfort first with my family, then went to Aaron’s house with Jadie and Seery. Debbie, Gary and Aaron’s younger sister, Hollie, were there with Aaron’s friend Jamie who was consoling Debbie cradling a photograph of her son. It was a surreal moment. Gary began discussing Aaron’s funeral and how best to celebrate his life. He kept repeating that he “shouldn’t be doing this” emphasizing the shattering reality of the situation. We went to the chapel of rest, to see our dear friend and share things with him that we hadn’t had the chance to, one of the most difficult things I have ever done. The time leading up to Aaron’s funeral brought our group of friends closer than ever, there for each other and wanting to be strong for Aaron and his family as his funeral approached. On the day I felt utter sadness, but also a sense of duty to him and his family. I was honoured to be both a pallbearer and reading my and his girlfriend Abbey’s tribute. The funeral was a testament to his popularity and l cannot imagine ever attending another like it. Everyone that Aaron knew came to pay their respects. It was, in every way, a celebration of his life. Afterwards the real heartache began. Looking at pictures of him, reading our old messages, watching films knowing that if he’d been there he’d find the same things funny – something I experience to this day. The impact of Aaron’s loss has greatly affected me. Losing someone so close, so unexpectedly, has taught me to appreciate how precious time is with the people you love. I have deeper relationships with close friends, their families, Aaron’s family. Our friendship group strengthened. I cherish every moment with my parents. Looking back, I realise that Aaron was already doing this with the people he valued most. I recall our Spanish camping trip for a music festival in the searing August heat. Aaron loved his home comforts, but sacrificed them to be part of something with his friends which involved sharing a tent with me as we moaned and groaned each night at lack of sleep and comfort. This is the Aaron that I will always remember. There are no words more fitting to finish with than the ones engraved on the stone where he rests: “We Will Remember You Always, Love You Eternally, And Never Ever Forget You”.

by Mike Lee

© Cardiac Risk in the Young 7

Harry’s Story My best friend, Harry, died on the evening of 7th February, 2013. We had both just recently turned 18. I was away at boarding school, in Shrewsbury. My mother rang very early the next morning, about 8am, which was totally out of character, so I knew immediately something was wrong. When I took the call I was getting ready for the school day, looking forward to going home for the exeat weekend and, of course, to seeing Harry. My mother’s voice was quivering, and when she said she had some tragic news, my whole body went numb. Not in a million years did I ever think it could be about Harry. I was speechless and devastated. It was surreal, as if she had got it, surely, completely wrong. I had no mutual friends with Harry up in Shrewsbury, so could not share this with anybody, but I spoke to my Housemaster who had, in fact, met Harry a couple of times at football tournaments. Harry’s family were utterly distraught, grief-stricken and devastated. No words I have can describe how heart-breaking and numbingly sad the whole situation was, especially to see people you care so much about in so much pain. When I arrived at their house, Harry’s mum sobbed and hugged me. I had no words. I was too shocked myself to take on board what had really happened. It was very distressing. Leading up to the funeral, I had returned to school, as I had A Levels pending. This helped me a little in that I had exams to tackle, but I was still in shock. I was not involved in any funeral arrangements, but sadly, the post-mortem was inconclusive, so this delayed it by some 6 weeks or so as well. However, Harry’s mother asked me if I would write a eulogy about my best friend, and to read it at the memorial service. I wrote with great pride, as it gave me the opportunity to share some of mine and Harry’s magical and funny moments from our years together, but asked my father to read it on my behalf as I was worried I might not be able to get through it. The funeral was extremely emotional, as most family members were sobbing uncontrollably. It was a highly emotive service, followed by the memorial service and I remember finding it utterly overwhelming to have all this in one day. Hundreds of people attended the memorial service and it was clear to see how many Harry had not only become friends with, but how much he had affected their lives. The loss of Harry has had a huge impact on my life. Not being able to send a text and then 5 minutes later be together is a change that I have had to come to terms with. Walking to the local shops every day became something I had to do alone rather than the two of us. The realisation that we will never play a game of garden cricket again, or allow Harry the satisfaction of making me run around a squash court! His passing has been extremely hard to come to terms with and has greatly impacted on my life. What can I say? Because words will not suffice. Harry was more than my best friend. He was the brother I never had. We did absolutely everything together, always. We were born 2 days apart, and “met” via our mothers at the tender age of 3 weeks. We then quite literally spent the following 18 years of our lives joined at the hip, living just 300 metres apart, and as our mothers would often joke during our many Friday night showstopping spectacular plays, we were “Dumb and Dumber”, “B1 and B2” and much more. These few simple words cannot do Harry justice. He was the most loyal, fun, kind, happy and smartest buddy in the world. You could not ask for, nor wish to have, a more genuine and special friend. 8 © Cardiac Risk in the Young

Our friendship “just worked”. We didn’t have to try hard, we never had a cross word and we had each other’s backs. It was a mutually rewarding and fantastic friendship, which as the years passed, just grew stronger and stronger. I’m lucky that we shared several special holidays together, and that we planned “in our heads” at least to one day run our business together and share a flat together. I will never forget Harry, he is always in my heart and my thoughts and I truly miss him. He would have been such a great achiever in this world (he already was through his squash) and he was/would have been such a great, loving gentleman. But most of all he was my true best friend.

by Jack Doyle

Harry died on a normal school Friday. I had the day off school and had missed a number of phone calls, before my friend Matt got through to me and told me the news. It felt isolating not being actually with my friends when I heard. I couldn’t believe that something like this had actually happened, especially to Harry. The whole school community was absolutely shocked. The atmosphere around school was very different while everyone reflected on Harry as a person, and while we were trying to come to terms with what had happened. We were all still teenagers at the time. It was frightening. You don’t expect anything like this to happen, or know how to react and cope with it. Harry was such an absolute gentleman, one of the nicest people we’ve ever known. He was always smiling or laughing. Not to mention his sporting abilities. Everyone at the school found it hard to come to terms with the dreadful news that someone like Harry had passed. I was at the funeral, alongside some of my Berkhamsted School friends. Nothing can describe being at the funeral of a great person and true friend, the same age as you, and so incredibly fit and healthy. Then, being suddenly dead, and having to say goodbye to them. The bravery of Donna, Stefan, the Faulkner and Hartmann families was incredible. I can’t comprehend what they must have been going through. The impact of Harry’s death makes you really appreciate life, your friends and to make the most of everything you have. Harry was kind and loving, and accomplished so much in his life! He definitely lived to the fullest. Losing a friend like that inspires you to do great things in your life, to enjoy and cherish the people around you and the opportunities you have. He was a truly brilliant bloke. It was a pleasure for everyone to be his mate, even though we had only known him for a couple of years! Having such an impact as a great guy in a short time at school is a tribute to his tremendous qualities. We will always remember Harry for how encouraging, polite and welcoming he was, always saying “come to the pub this weekend”, and getting a group together. We’ll never forget his true gentlemanly qualities, his enjoyment of life and his friendship. Rest well, Harry.

by Joel Mellman, on behalf of Joel, Will Gilbey and Harry Sambrook

© Cardiac Risk in the Young 9

David’s Story Dave and I got to know each other in the first year of primary school in reception class. He lived in the street opposite to us so we got to know each other really well and quickly became firm friends. When we got to secondary school we would get the train together which made the trip good fun. It still makes me laugh when I think about some of the things we got up to. Some of our adventures might have worried our mums so we decided to keep them quiet and stay memories just between me and Dave! It chokes me up when I stop and think he isn’t there to have a laugh with any more about the things we did together. We remained close when we left school and all through Dave’s life we were best friends. We shared so much of our lives together and would meet up sometimes during the week and often went out at weekends. Dave worked for his dad after leaving school as a wooden floor fitter, and I worked for a block paving company. As we got older we had all sorts of plans, including getting a flat together at one point, but I moved in with my girlfriend so it didn’t happen. Although it was so many years ago I still think about the night my sister and dad turned up at my flat that I shared with my girlfriend to tell me he had died. I couldn’t believe what they were saying, that my mate had died suddenly in his sleep. At that time we had no idea how this had happened, and it seemed so unbelievable. I remember feeling totally numb, not really taking anything in. Nothing made any sense to me. I wasn’t really very involved with Dave’s funeral, so that morning I arrived at the church and sat quietly with my girlfriend and my family. It wasn’t until I saw Dave’s coffin being carried in by his hockey team that the emotion hit me. I just kept saying to myself “that was my best friend”. I couldn’t believe it. Dave was 19 years old when he died. I kept thinking how terrible I felt because he had texted me the day before he died to see if I wanted to go into town. It had been snowing and was really cold so I said no. I never got to see him again. Even now I feel really guilty about it and also feel that I really let him down. How pathetic I was that I did not want to go out because of the weather. It hadn’t stopped him wanting us to get together in town. I wonder sometimes if anything would have been different if I had gone in with him then. Whether I could have saved him if he had collapsed when we were together. We had known each other for years and years and it cuts me up that he was alone when he died. We all went to the wake after the funeral and the pub was filled with loads of people; many of whom I knew and also so many that I did not know. It was all really overwhelming. There were pictures that had been put up of Dave on the walls. I was really pleased to see that there was one of me and him when we were young and other ones too. 10 © Cardiac Risk in the Young

There were people at the wake who I hadn’t seen since our school days which felt really strange. We had all changed such a lot, been busy building our lives allowing no time for old friends, some of whom I barely recognised. Then, suddenly, we had been drawn together because one of us, apparently fit and healthy, had unbelievably been found dead in his bed. Like the worst sort of nightmare. I didn’t stay very long, as my girlfriend said she wanted to go. I can understand that it must have been very difficult for her as she did not know anyone there and everyone was so distressed. There was no-one but myself for her to talk to, but the problem was that I wanted to talk to so many people. People like me who knew Dave and couldn’t understand what had happened (his relatives, most of whom I knew quite well) but especially his family and, in particular, his brothers. I think it would have helped me a lot to have someone like that to talk about it with on that day. Someone who was close to him. Someone who could relate to how bad I felt. I wish now that I had taken my girlfriend home and then returned to be with old friends and his family. When I think back now there is a part of me that I don’t like because I do I feel angry with her as I really did want to stay on with my friends and Dave’s family. However, there is another part of me that does now also recognise, looking back, that it is not fair to blame her. I should take responsibility for not staying on. Thinking about it now I also feel that perhaps a part of me was running away as I still couldn’t cope with him being dead. I feel angry sometimes over a lot of things that happened at that time. I don’t really want to mention them, but I have, since doing this write-up, spoken to my dad about them and feel better for doing so. I don’t understand why I did not talk to him before. Talking to someone so close to me who knows me so well has a made a big difference and helped me a lot to deal with the loss of Dave. I felt safe talking to Dad. Doing this write-up has helped me too. It’s made me confront things and I feel that I am clearer now and my feelings are more sorted and better under control. I still find it hard to believe, all this time later. I think that I was so shocked by it, that maybe it will never feel real, I don’t know. To lose my best friend in such an unexpected way was something I couldn’t have ever imagined. My dad, mum and sister run every year to raise money for Cardiac Risk in the Young in his memory. I watch and support them, but don’t run. Dave knows I wasn’t really into sports. His family organise the Team David run every year. It gives us a very special chance to be together, remembering him. Having the chance to talk together about him. We have all been screened now through CRY’s screening programme and when we get the opportunity make sure we take it to talk to others about getting screened too. As the days, months and years pass by I continue to deeply miss my friend. I have had a little boy who I have called Davey in his memory. My best friend Dave will never be forgotten and I cherish my memories of all the times and things we shared which will always be with me.

by Jack Trott

© Cardiac Risk in the Young 11

Thomas’s Story Tom and I were living with three friends and into our final year at Leeds Met preparing for our first block of exams and assignments before going home for Christmas. It was 5 days before Tom’s 22nd birthday and 3 before my 21st. We were looking forward to a weekend of celebrating. I had dismissed the text enquiring where Tom was but went to his room when I got back. That’s when I found him. Two of the lads came up when I shouted and that’s when it dawned on me. We turned Tom over to try and resuscitate him but it was too late. I tried to ring for an ambulance but I couldn’t speak. I was just sat next to Tom distraught. The paramedic confirmed what I already knew. I stared out of my bedroom window. I can’t remember the next couple of hours. Then my phone started to ring. Tom was such a loved and popular lad. He knew everybody, I must have spoken to about 30/40 people that night. Everybody hoping that what they have heard wasn’t true. Tom was the life and soul of the party everywhere he went. Everybody loved him, none more so than his family and friends. When we got to the funeral I was a pall-bearer going into the church and that’s when it hit home. I couldn’t look at anyone, or speak. I didn’t listen to the service. How can such a fit, energetic lad just die in his sleep? Afterwards everybody was reminiscing and celebrating his life. I struggled to come to terms with what happened and went through spells of being okay for weeks and months, but then suddenly it all came crashing back down. Every time I had a drink or went out it would all come flooding back. I was in denial and wanted everything back to normal, but how could it? Tom was an inspirational person. He went that extra mile for everybody. On my 19th birthday at university we had planned to celebrate in Leeds but heavy snow the night before meant no taxis. Tom and another lad walked two miles through the snow to my halls carrying a couple of crates of beer. He always loved a party so the snow wouldn’t stop him but to have someone in your life willing to do that was special. He was, and I’ll always be grateful I could call him a friend.

by Thomas Blundell

It was a Wednesday and I noticed several missed calls on my phone. News started filtering in through our friends but was dismissed as some sort of joke that had gotten out of hand; but with each phone call it became clearer that we had lost our very close friend at 21. It was not until seeing it in the morning on social media that it became real, and not just a terrible dream. The impact was not only on his close friends but on the whole town and community. Tommy had friends from school, university and numerous cricket and football teams. I was so devastated and disbelieving that I could not bring myself to speak to his family who I had known for as long as I knew him. Leading up to the funeral my overwhelming emotion was of sadness and loss. As days passed friends shared memories and the feeling of sorrow was joined by a great sense of pride. Proud that we had been a part of Tommy’s short time with us, but even more proud that he was a part of ours. The stories exchanged reinforced what a terrific, funny, helpful, caring friend he was. The funeral was the most difficult day in my life. The large 12 © Cardiac Risk in the Young

church was filled to capacity with people lining the aisles. It was clear to see just how many people’s lives Tommy had touched over the years from all sorts of backgrounds. After, I felt empty. I had just said goodbye to my best friend for the last ever time and could not get my head around the fact that I would not be seeing his face, or hearing his voice, or his name popping up on my phone. This loss has had a significant impact on my life, not only through the changes I have made since Tommy’s passing but also subconsciously. It emphasised how important it is to spend that life with the ones we love most, not worrying about the little things that got us down. Losing Tommy has brought not only our close-knit group of friends even closer, but continues to bring the whole community together at multiple events to raise money in memory of Tommy in aid of CRY. Tom was the smartest person I had ever met; head and shoulders above the rest of the school year. He excelled at everything. Always a leader, he was continuously top of the rankings. To be close to him was an honour for his friends, team members, colleagues and even his family. His passing was a terrible example of how cruel life can be and how fast life can be taken away. I will be forever grateful and proud to have been a friend of Tommy Hardman’s. by Tom Crook on behalf of Tom, Michael Armitage and Sean Duffy I was 24 when Tom died. I still remember the day as if it was yesterday. He worked for me at a Leeds hotel and I was on my way to meet him when I got a call that he was dead. I broke down and was in total shock. I couldn’t believe it. I had only seen him a few days before. I rang my mum, who still lives next door but one to Tom’s mum and dad, to tell her, then told close friends of ours. My last phone call was to another friend Tom, who lived with Tom at uni. He was at the police station being one of the people who found Tom. He was lost for words. I didn’t sleep that night. You never expect a phone call telling you that your best friend has died. Being one of Tom’s closest friends, living next door but one to him, growing up together meant his mum and dad seemed part of my family. Tom’s sudden death destroyed his parents and it took me several days to go round. I did not want it to be true but was able to help pick music and songs for his funeral, help carry his coffin into the church and give a speech at his funeral. At the time it was both the hardest but the easiest thing I have ever done. I think I did him proud. It was hard saying goodbye to a best friend, a great guy, loved by many people, but so easy to say good things about him and speak for him on a day where the church, inside and outside, was packed full of people paying their respects. It was amazing how many had travelled there from afar. Losing a best friend is something you never get over and I’m so grateful that I got to spend so much time growing up with Tom but would give up anything to have another day with him. I look at life differently now, and take a lot less for granted, I live more for every day as you never know when it may be your last. After Tom died his mum gave me his 20/20 Heywood cricket shirt. Tom had worn it on his last ever game for Heywood when we opened the batting together. I have this shirt in my bedroom along with mine, it’s something that reminds me of him every day. I will never ever forget the great memories I have of Tom. Tom is my hero, and forever will be.

by Joseph O’Neill

© Cardiac Risk in the Young 13

Daniel’s Story I read a status posted on social media which ended with “RIP Buddy, will miss ya” and Dan’s name. I reread it and messaged him. Worry became panic. His mum answered my call. Sobbing, she told me “he had gone”. At his house I threw my arms around her and cried. I will never forget the look of complete devastation on each face as the family told me that Dan had died in his sleep. He was a very popular postman with many friends and I offered to help by informing them. Most of us had met in primary school and they were the most emotional calls I have ever made. We were the only people in the silent pub that afternoon. Everyone was in shock and speechless. As more friends arrived recollecting Dan, stories bought tears and smiles. We had spent our childhoods, teenage years and early twenties together so there was lots to recall. The evening culminated in a packed-out pub, huddled together outside, singing “There’s only one Danny Hughes”. We are told by many, including Dan’s parents, that we could be heard throughout the village. Struggling to accept he was gone I found the period before the funeral difficult. We helped Dan’s parents when we could. It was an honour when they asked us to bear his coffin and walk with him one last time. I had been dreading the day as I was reading at the service and worried I wouldn’t hold it together. The road to the crematorium was lined with hundreds of people and I found I couldn’t look at them. The beautiful service was a true celebration of every aspect of his life. I read a small piece that centred on how I viewed my best mate. Nearly 2 years of memories have now been made without him here to share them. I find that hard. Sometimes I forget he’s gone. When I realise, it’s as hard as that Thursday morning. Soon we will be celebrating what would have been Dan’s 30th Birthday. Ever since he passed I think about him every day. Friends are the family you choose and I’ll always consider him a brother. It hurts that he’s not here to see how my life is going and that I’ll never see where his could have gone. I am just glad that I got to spend nearly 28 years with him. There is a Daniel Hughes shaped hole within my life and I speak for our friends when I say we miss him everyday and will always love him.

by Steven Bailey

A normal morning passed at work and I grabbed my mug for a brew. A friend messaged me asking about Danny Hughes. Then Steve Bailey’s read ‘ring me mate’ - the moment he answered everything seemed to stop. Dan had passed away in his sleep. It was the worst thing I’ve ever heard. I rang mum and remember her gasping with disbelief. Shock, sickness, panic, fear, sorrow, devastation, sadness, anger, despair can’t describe what I was thinking. I drove slowly home through my tears. Many of us met up in the pub. Hugs, tears and beers followed, as the sad news spread and more people kept arriving. Dan’s family were truly rocked by his passing. I couldn’t begin to understand how they were feeling. I could only be there for them. They wanted ‘the lads’ involved in organising his funeral. An honour for us all. People seemed to be on auto pilot, getting things done whilst still grieving and trying to figure out what had happened to Dan. Tuesday 7th April 2015 was the day we said goodbye. 14 © Cardiac Risk in the Young

The morning came and we walked to his home. The moment the funeral cars turned onto Dan’s road will stay with me forever as we stood there in pieces beside his coffin. Seeing hundreds of people waiting for Dan, lining both sides of the road at the crematorium like a huge guard of honour, was unforgettable too. It took my breath away. We carried him into the crematorium, took our seats and waited as the huge crowd followed us in. We cried, laughed, sang, remembered and mourned. Then said goodbye. We had grown up together, from primary school reception to age 28, but from here life has to go on without Dan. I think about him every day. Almost 2 years on as I write this I still have moments where I tear up, or chuckle to myself, remembering the laughs we shared! I am so lucky to have called him my friend. Whether it’s his family, friends, work colleagues or whoever, if they knew Dan they sorely miss him. It is not easy living without him around, but we cope by sticking together.

by Dave Hickson

Bailey called and nothing, nobody could have prepared me for what he said. Shaken, sweating, heartbroken I drove to Dan’s home. The family were there, with Bailey. Dan’s dad asked if I would like to see him. He lay peacefully. I told him I loved him and how much I was going to miss him. The family’s distress was terrible and I wanted to say I could make things ok, but knew I couldn’t. My phone filled with missed calls and texts. We met in the pub. Silence at first, then tears, hugs and raising a toast to Dan. The pub was soon packed. Everybody loved him. Dan’s family wanted his friends involved with the funeral. He was a Stoke City fan so we wore retro Stoke tops printed with ‘Hughes’ and ‘2’ on the back. We included the Stoke fans favourite “Delilah” with the songs we chose, as well as the clothes he would wear. We organised flowers and helped with the wake. His coffin was breath-taking; brightly decorated with pictures of him, his family and friends. So many came. He touched so many lives. Carrying his coffin with friends was the most upsetting thing I have ever done but an honour that I so needed as it gave me a place by his side on the day I would say my final goodbye. Hundreds of people gathered after at the cricket club to share Dan stories, raise toasts, sing and dance to his favourite songs. I felt proud of the send off we gave him and knew he was looking down laughing at us, the way he always did. The sadness of his tragic death will be with me forever. As far back as I can remember, he was one of my closest friends. Always together; at primary and high school, playing and watching football, on holiday, drinking, singing, laughing. Nearly 2 years later, I still go to text him. I miss his dancing, his stories and how he made me laugh. No longer able to do any of those things with Dan again, I take comfort in the many special memories. We are closer now with Dan’s truly incredible family whether we’re involved in fundraising events, family events or simply a pint in the pub. He would be so proud of the inspirational work they do for CRY. Dan, you were one in a million, a true gentleman, but more importantly a treasured friend. I will never forget the times we shared and not a day goes by that I don’t remember your infectious laugh and how you made me smile. You were taken far too soon, but will never be forgotten. Miss you always mate, Nath.

by Nathan Shaw

© Cardiac Risk in the Young 15

Alex’s Story Alex and I were 16. She was my best friend and I cannot express the pain I felt when mum phoned me to say that they were on their way. Alex had died in her sleep. I began shaking uncontrollably, continually asking ‘how’? and packed my bags still shaking. I tried calling her, praying she would answer - voicemail. I sent a text - no response. I was in denial and thought I was going insane. I wanted to speak to Alex, who was theonly one I couldn’t speak to. My friendship group were together with their parents at a friend’s house when I got back. Everyone was grieving in different ways, some quiet and others chatting pretending it hadn’t happened. Parents felt helpless. After a sleepless night I met Alex’s parents at the children’s hospital where she lay peacefully. I knew (still know) her parents very well, and to see them so broken was heartbreaking. I wanted to bring her back to fix their pain. Before the funeral I stayed in my parents’ room. I wanted to be surrounded by people I knew. There was a daunting amount of people at the funeral and everyone dressed in bright colours to reflect Alex’s personality, but the speeches were hard to listen to as it made everything so real. When Alex was carried up in her wicker coffin the realisation that I was never going to be able to see or speak to her again broke my heart. She was truly gone. After, I found it hard to see people carrying on with their lives, when mine had been turned upside down. I couldn’t understand it then and still can’t now. I struggled to talk about it so suffered in silence and wish I had spoken about it more. People complaining about little things angered me. I still couldn’t sleep, as when I closed my eyes I would see her. I questioned whether I could have done anything to prevent it and re-read our conversations over and over. I accept now that Alex has gone and like to think she was taken for a reason. She made my life better and helped me get to where I am today. I am forever grateful for the years I had with her and just wish we could have grown old together. I miss you, Alex, every day.

by Eleanor Cornwall

Aged 15, whilst waiting at school for my friends to finish their last GCSE exam so we could look forward to the summer ahead, I saw a friend in floods of tears. She told me the news that Alex had died, the words of which still throb in my head when I think back to that day. When trying to process this information, I remember a sudden interruption in reality; a moment of utter confusion; a dismissal of what I’d just been told, as well as sheer, numbing shock. My legs abandoned me and words escaped me as I began to understand that this was real. Knowing Alex through playing netball together rather than being a school friend who saw her every day, made for a confusing dynamic for me to manage. Her immediate absence wasn’t shocking to me, as I usually saw her once or twice a week, for only a few hours at a time. For this, I felt guilty. I felt our cross-county friendship couldn’t compare as I knew how shattered her school friends were. It dawned on me when I visited her family and expected her to come bounding down the stairs, that I would never see her again. I wouldn’t see her at netball training, have another night howling at her baby photos, or go 16 © Cardiac Risk in the Young

to university together (as we often joked), where I would keep her organised (forgetting things was commonplace with Alex) and she would cook and bake for me. I dreaded the funeral as I knew that this was when her death became ‘official’. Alex’s death was my first experience of grief and I found that there was no predictable way to feel and that everyone reacts and adapts differently. It is a process I muddled through day by day, and phase by phase in my life. Three years after her death, starting university revived her absence for me. I am sure that as other momentous events pass me by, similar revivals will follow. Alex, I often think of you. The transition from childhood to (almost) adulthood has presented difficulties; decisions and change. You are my moral compass and my comfort when things are hard, as I know you are always with me. The mantra ‘What Would Alex Do’ always seems to be relevant. You were, intrinsically, to your core, with every iota of your being, the most caring, considerate, understanding, patient and radiant human being. I am lucky to be here living this change and looking ahead to my future, a future that should have had you in it. What I do, I do for us, I feel I need to live well and succeed for us both.

by Aneesah Kabba-Kamara

It was 5 years ago when we were 16 and both finishing our GCSE exams. Alex only had German left. I was sleeping in when I heard the phone in my parent’s room. Then Dad came in and told me the news. I cannot remember what he said. Just the tears, the pain, my brother comforting me, but not the words that my father used to tell me that my oldest friend had died. I cannot remember most of the things said that day and as the pain has eased so have the details. We went to Alex’s home that morning, to support her family. I had known them for as long as I can remember and Alex, her sister and myself spent our childhood together. Entering the house was the most painful part of all of it. Nothing can describe the expressions I saw on Alex’s family’s faces that day. In the course of one night, their lives had been changed forever. The time before the funeral was the hardest. It was a blur. A grey area when nothing felt real - as if there was still time to wake up. My last days of school were happy but I felt guilty whenever I found myself smiling. The pain was still sharp, and felt like it would never fade. Alex’s funeral was brim full of all the people who she had loved and who loved her, and - although I was unable to be there - I felt this stillness, that she was gone, officially. I realised that this was the beginning of the rest of my life, a life without Alex, and like so many of her friends, I didn’t know what to think or say. Alex’s death harshly impacted on my life and for some time I felt guilty whenever I was happy or enjoying life moving forward. I couldn’t comprehend why such a thing would happen. Time eventually levelled things out again, but the impact of her death changed me. I live life more in the moment now and work harder for the things that I want. I value friendships and relationships more since losing Alex. Alexandra Reid was an amazing person who always worked to make everyone feel special. She was taken from us far too soon. I feel truly grateful for knowing her.

by Rebecca Say

© Cardiac Risk in the Young 17

Robert’s Story It was a warm evening the night prior. The heat was so intense we slept with our heads at the foot of the bed; something I normally disliked but it seemed necessary for some reason. Around 8:30 in the morning my phone rang and I remember feeling grouchy that someone could ring so early. It was my mother, who would normally text me. I picked it up and whispered so as not to wake my girlfriend Sam. My mother, sobbing, started saying “It’s Robert.” I leapt out of bed and staring out of the window, now wide awake asked what had happened. She wanted to know if Robert’s cousin, Jordan, had rung and began shouting, getting me worried and frustrated. “It’s Robert, Robert’s died. It’s Robert, he’s dead” she began hysterically. “WHAT! No, you’re wrong, when, how? He’s not, nah, not Rob... What happened!?!” Tears filled my eyes and I shook uncontrollably, staring out of the window. The noise woke Sam. Mam told me they didn’t know yet but Jordan was going to try and call. She started “I’m so sorry, son, I know you were close.” “He’s my best friend, I need to speak to Jordan. I have to go.” I was bawling like a child, my heart beating out of my chest. Sam asked softly what had happened and I turned from the window, my eyes streaming “It’s Robert, he’s dead, I’ve got to speak to his cousin” I said as I ran out of the room and down the stairs into the living room. I sat slumped on the floor holding my phone tight in my hand, wiping the tears from my eyes to see the screen in front of me. A voicemail message from Jordan was left and I had a pathetic sense of hope that it was all a horrible joke and that Jordan would say it was all a wind up. I listened intently as my hope drained away like the plug in the bath being pulled. My chest hurt as I cried silently. Sam entered the room and held me, trying to get some answers as to what had happened. All feeling drained from me, and my insides felt like cement. My phone rang again and I stood up tapping Sam’s hand to release the hug she had held me in. I asked Jordan if what mam had said was true? She began telling me the details about how he was found and how they didn’t yet know what had happened. I didn’t know what else to say except ask her if she was alright. I was hurting like my own brother had just died, but at the same time knew I had to be strong for Jordan. I didn’t cry on the phone to her. I didn’t want her to worry as she had enough to worry about so spoke softly trying to get some answers without pushing or prying. I felt more disconnected from home than ever before, as if I was on a different planet rather than in a different region. I left a small tribute on his Facebook and posted a photo of us both with a caption that I hoped would express my deep hurt, but didn’t even scratch the surface. Our friends began to comment. I noticed others had done the same, including his family. I wanted more than anything to be at home to be close to everyone. I texted Jordan a lot in the next few days. I started feeling cut off and wanted to spend time alone listening to songs he liked. Jordan told me that people were speculating. We are from a small village and people talk and make their own conclusions when the answers aren’t there. This enraged and overwhelmed me. We spoke a while and I don’t think Jordan realised when I began crying again.

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All of his family were hurting, that was evident. I think it was his auntie Elaine who explained what had happened once they had found out from the autopsy. SADS - I’d never even heard of it but it had killed my best friend. “How?” He was healthy, his heart just stopped. Once a date had been set for the funeral I had to get to Durham, so rang work and explained the situation. I was surprised when they said I could have the week off. I hadn’t expected them to understand. Linda, Robert’s mam, had asked Jordan to help with the music choices for the funeral, so she asked for my advice. The problem was Rob liked upbeat or songs with a base like Ruby by the Kaiserchiefs, not the sort of thing you could play at crematorium. I knew a few softer songs that Robert liked, like ‘A-Team’ by Ed Sheeran, but we agreed the message in the song wasn’t the sort of thing you would want at a funeral. Eventually, Linda made her own choices using songs that reflected his personality, or how we all felt about him. I arrived at the funeral and saw that there was already a huge queue of people there. I stood at the back of the Crem, near a good number of Jordan’s friends as well as Richard, a friend of Robert and I. They began telling stories from Robert’s life and got to the one that concerned us being suspected as armed robbers (a long story). This got to me, I burst out crying and grabbed my mam, which set off a number of lasses around me crying too. After, we piled outside and I saw Linda coming down the steps. People stood around staring and as I was relatively close I approached her. I could see she was trying to hold everything back and so I held her. When she cried I said gently “It’s okay” and we stood hugging for a few minutes. Then I moved back to allow others to support her. I went around the family and spoke to them all and remember hugging Shannon and Josh, Robert’s brother, who were standing near the exit to the Crem. Shannon was worried about spoiling my blazer with her makeup so I hugged her even more and then spoke to Josh, telling him “If you ever need anything, you know how to reach me.” He just nodded but stood taller than I had ever seen him before. Rob’s death affected me in a way no other death previously had. I’m not sure if it was the unpredictability of the whole thing or something else. I have lost dear relatives and it didn’t come close to the grief that consumed my life after Robert’s passing. I would find time alone to cry; late at night, in the bath, public toilets anywhere I was out of sight. Songs were the worst. Just random songs I’d never even heard would start me off. Sam was very supportive and understood I needed space sometimes to heal. It wasn’t a short grief for me. I would suddenly just break down until recently, and, while it has been a long journey since his passing, I finally think I am now starting to heal. Robert had a unique quality of making any situation seem like fun. We understood each other and our friendship was worth more to me than all my possessions combined. We enjoyed each other’s conversation and would talk on the phone for hours when we had been apart for a while. We would act as confidante to each other’s problems. As youngsters we saw each other almost every night after school and I walked to his house before school each morning to catch the bus together. We would play football on every break or cards if it rained - usually our own version of poker, fish or Jacks 2s and 8s. He was my best friend, the best friend a lad could have. And he will always live in the memories of his family and friends.

by Nathan Annakin

© Cardiac Risk in the Young 19

Jemima’s Story ‘A force for joy’ – that was Jemima - the warmest, sunniest and funniest of friends. Loved by everyone she met, Jemima was the girl you always hoped you would get sat next to at a party. Learning she had died was the first time in my life I truly experienced grief. People describe it as a ‘blow’ and that is exactly how it felt; painful and disorientating. My first thought was to call her. Everyone I spoke to reacted in the same way, with utter disbelief. As Jemima was living in Singapore at the time our minds kept going back and forth between despair and hope – hope that they had got it wrong and she was OK. It just was not fathomable that Jemima, our Jemima, could possibly be gone. I called close friends to let them know. Little things helped us cope – swapping memories and trying desperately to recall every experience we had shared with her. There were lots of tears but also lots and lots of laughter too. Talking about her so openly set a good precedent for how we have been as a friendship group since. We keep her in our conversations as much as we can; when something funny reminds us of her, when we hear her favourite song and just when we miss her. Her employers dedicated an office room to Jemima, filled with flowers and photographs of her, forever smiling, there was a book for messages for her and the family. Having a space to visit helped everyone feel closer to her in those early days of grief. The private burial was followed later by a celebration of her life at the family home. It was such unknown territory we were all anxious, but it was perfect. My strongest memories are of beautiful sunshine, warm smiles and so very much love. Groups of her friends were invited to each plan a different part of the day and gave us free reign. Jemima was renowned for her love of games and never without a pack of playing cards in her handbag, so we asked friends and colleagues to share their favourite ‘I’ll never forget the time Jemima…’ memories with us and we had them printed on to packs of playing cards along with our favourite photos of her. These were displayed for everyone. We so hoped that one day the family would be able to smile at some of the hilarious moments we shared. Jemima’s priorities were her family, her friends and having fun and we felt everything went exactly as she would have wanted it to. One of the most comforting aspects of the day was having the opportunity to meet and talk to people from other parts of Jemima’s world. Her family, her old school friends, her university friends. When Jemima passed away I had an overwhelming need to know everything about her, to try and fill in all the gaps I had assumed we would have a lifetime to talk about. Meeting these new people, and hearing new stories, helped so much. In spite of all the sadness, Jemima had such a positive impact on our lives that we are all determined to let that be her lasting legacy. She taught so many of us to be true to ourselves, more open to others and not to take life too seriously. Above all she taught everyone she met how to have more fun! We have coined the phrase ‘what would Jemima do’ as a motto to get the most out of every single experience we have, just like she did. The loss of Jemima has changed us all in different ways. For me, it’s a little part of the world that is colder than it should be, a tinge of grey that I just can’t shake. I think about her every day and dream about her a lot – but she is always very slightly out of reach or focus, obscured on a train or walking just a step too quickly for me to catch her.

by Coral Briggs

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Virgin Active gym called early on Sunday 3rd July. Jemima was in hospital. I needed to contact her next of kin. I collapsed when I learned the news. Disbelief switched to feelings of numbness. It was only when I began to hear myself say it that it began to sink in. I wanted all the information I could get to try and understand what had happened. It seemed inconceivable that someone so full of life could be gone. It still does. I remember calling mum saying ‘I don’t feel anything. I want to feel something. I need to cry but I can’t’ and then realising that I was sobbing down the phone. I felt – still do – that something horribly unfair had happened. I have lost track of the times I thought “why Mimes”. Her burial was private and the family later hosted an emotional memorial at their house for over 150 friends, family, and colleagues. Friends held a private memorial ceremony in a London church followed by a duck race off Albert Bridge before going to the pub. I was close to Jemima’s parents but had not spoken to them since the initial call and was nervous about seeing them, but felt reassured when they said the wanted us all to remain a big part of their lives. They asked if we would coordinate a tribute so we shared our favourite memories by sourcing a paddling pool and thirty rubber ducks, each themed to a different memory of Jemima. We picked out a duck, told the corresponding story then invited others to do the same. Jemima’s parents then led a duck race down their cray-fish stream – fittingly won by Andrew, Jemima’s dad! The impact of Jemima’s death has been huge and created an underlying sadness to everything. We’ve lost our best friend and nothing can prepare you for that. It has given me a better perspective and I realise I am lucky that this is the first time I’ve had to experience pain like this. It’s only been a few months but we try to live life the way Jemima would have lived hers, with an enviably positive outlook, enthusiasm and a carefree attitude. I have a close group of friends but there are still moments when I feel completely alone. I don’t want to turn to them when I’m having a bad day in case they are having a good one. Selfishly, I would push them away then resent them for not being there. I would see them carrying on with their day to day lives and not understand how they could act normally. Some people let me push them away, but others refused – allowing me to ignore them when I needed, but constantly checking so I knew they were there whenever I was ready. That support is something I will never forget. There was nothing anyone could do for me as nothing could take the pain away. After several months, I began talking about it more often, processing what happened, and letting people back into my life. Jemima made an instant impact on everyone she met. Everybody loved her. She was always the same: with family, friends, colleagues, strangers, with anyone. She was positive, daring, fun, care-free, considerate, loyal, genuine and memorable! Her smile, laugh and energy were contagious. We have learnt so much from her – staying positive, not to submit to peer pressure, and how to be free of inhibitions. The biggest thing we all take from the privilege of Jemima’s friendship is the importance of being open to yourself, new experiences, everything life has to offer. She is irreplaceable. We feel so lucky to have been close to her and will cherish every memory we have with her forever. We feel her loss every day.

by Jessica Spokes

© Cardiac Risk in the Young 21

Sam’s Story Sam died on Sunday 11th December 2011 when we were both 19. I was at home with my family, and I went up to my bedroom to get my phone. I noticed I’d missed a call from Sam’s girlfriend. I called her back and I still remember her exact words and the pain I could hear in her voice as she said them, “Um… basically… Sam died today”. Initially, I was just in shock. I asked how he’d died and I was told it was something to do with his heart, but they weren’t completely sure yet. I couldn’t, and didn’t want to, believe it. The first thing I did was go and tell my family (my parents and his parents are also good friends) and my dad thought it was just wind-up, that someone was spreading silly rumours on Facebook or something. Messages for Sam started pouring in very quickly on his Facebook page – including people asking if it was really true – I wasn’t the only one who didn’t believe it. It really showed how much of an impact Sam had on other people’s lives. There were hundreds of messages. Everyone was sharing photos and sending messages and trying to support to each other. We visited Sam’s parents’ house a few days afterwards. I think they were struggling to get their heads around everything, as well as feeling completely numb and lost. I think that they were overwhelmed with the amount of support and the tributes and flowers that had arrived at their house. To this day, they still can’t quite believe that it happened to their Sam. We didn’t see Sam’s extended family straight away but I know that his brother received a lot of messages over Facebook. I still refused to believe Sam was really gone, until I heard that they’d sent his heart away for further testing – the thought of him without a heart in his body hit me really hard, and I realised I’d actually have to start coming to terms with the fact that a funeral would be happening, like it or not. I felt that I couldn’t just let the funeral pass by without offering to help and doing something that I know Sam would have liked. A few days before he’d died, he’d been helping me out on a cake stall at a Christmas market. I thought a nice way to pay tribute to him and to reinforce my last memory of him would be to make some cupcakes for the wake. Sam’s parents wanted to give everybody a chance to get involved if they wanted to, so some of Sam’s other friends performed songs, poems and music at the funeral, which was extremely moving. I sat with my family at the funeral. Everyone had been asked to wear red, as it was Sam’s favourite colour, so the room was flooded with red shirts, dresses and shoes. Even Sam’s coffin was bright red. As soon as I caught sight of it, I couldn’t keep my emotion in and I stood and cried my eyes out. I didn’t think I’d ever stop. 22 © Cardiac Risk in the Young

The church was so full of people, it really helped to see all of Sam’s friends there together, giving each other hugs and smiling across the room at each other. It was at that point that I thought maybe there’s a chance we can get through it all together. I told myself that Sam was watching us, and thanking us for paying tribute to him in such an amazing way. The wake after Sam’s funeral was difficult. Everyone was sharing “Sam” stories and it was obvious that it was going to continue for the rest of the day. When it came to the time to leave, I just didn’t want to go. I could’ve stayed there with everyone forever, remembering Sam. We had a family trip planned to London shortly afterwards and I don’t think any of us paid attention to the show we watched at the theatre. I know that there was nothing else on my mind for a very long time. Sam and I had a teenage romance at school when we were 14/15 years old. We met through a mutual friend that we both used to hang around with. The first time I saw him I was fascinated by him. He was energetic, mischievous and hilarious. Our mutual love of adventure and fun meant that our whole 18-month relationship was full of spontaneous outings and crazy ideas. When we split, being at the same school meant that we kept in touch, but we didn’t stay close friends. It wasn’t until about 3 months before he died, when we began to rekindle our friendship and meet up more often. I only wish we’d done it much sooner than that. The loss of Sam has had a huge impact on my life. It’s changed everything. It’s taught me to make the most of every opportunity. To always live every moment to the fullest, and that life is too short to do anything other than what makes you happy. It has motivated me to try to stop other families and friends having to experience the same devastation as we did, which is why I chose to fundraise and raise awareness for Cardiac Risk in the Young, and was so delighted soon afterwards to be invited to become a representative for the charity. It was such an easy decision to make. Sam’s outlook on life was so positive – he saw the fun in everything and was able to lift the mood in any situation. I have done my best to adopt this attitude and I know that Sam’s personality will continue to live on through me and many of his other friends, for the rest of our lives. Sam’s sudden death has made me a much more emotional person which has its benefits and its downfalls for every relationship! It has helped me to appreciate the little things in life and never to take anyone that is important to you for granted. I have become much closer to Sam’s parents and my own parents as a result. With each year that passes, the amount we think about Sam doesn’t change. It’s just another milestone that we cross to say we’ve somehow made it this far without him. We won’t ever accept he’s gone, we just become better experienced at being the ones left behind. We will spend the rest of our lives doing things to make him proud.

by Dani West

© Cardiac Risk in the Young 23

How to get yout heart checked CRY wants all young people to have the opportunity to have their hearts tested. Every week in the UK, 12 apparently fit and healthy young people, age 35 and under, die from undiagnosed cardiac conditions. When symptoms do present they include chest pain, syncope / passing out, palpitations, breathlessness (disproportionate to the amount of exercise) and dizziness. Exercise related chest pain or passing out as well as a family history of young sudden death are all red flags and if experienced a person should contact CRY for a referral to a specialist. However, 80% of young sudden cardiac deaths will occur with no prior symptoms which is why cardiac screening with an electrocardiogram (ECG) is so important. One in every 300 of the young people that CRY tests will be identified with a potentially life threatening condition. One in 100 people CRY tests will have a condition that is not life threatening but could cause problems in later life if not identified early and monitored. Although screening will not identify all young people at risk, in Italy, where screening is mandatory for all young people engaged in organised sport, they have reduced the incidence of young sudden cardiac death by 89%. Within 3 clicks of a mouse any person between the age of 14 and 35 can book a free appointment on CRY’s website www.testmyheart.org.uk where they will have an ECG, a consultation with a doctor and a follow up ultrasound if required based on the ECG or medical questionnaire.

Walks in memory The CRY Heart of London Bridges Walk is the biggest annual event on the CRY calendar, attended by over a thousand supporters every summer – the vast majority of whom have been personally affected by the sudden cardiac death of a young person. The CRY Heart of Durham Walk was instigated by our supporters in 2010 and has become an important autumn event in the city, with over a hundred friends and family affected by the sudden cardiac death of a young person taking part every year. The events offer participants the opportunity to walk and remember young people, who have died from sudden death syndrome. Many people will be taking part on their own and many as part of a team. There will be an opportunity to meet others who are also walking in memory of someone they knew. For more information, or to register your interest in the next London Bridges Walk or Durham Walk, please call CRY on 01737 363222 or email events@c-r-y.org.uk 24 © Cardiac Risk in the Young

Facebook support group CRY has a Friends Facebook support group where people (aged 18 and over) can connect and share experiences with others who have lost a friend to a young sudden cardiac death. So many of those who contact CRY want to talk to others who have experienced a similar loss. The groups are private communities for people who are in touch with CRY to connect, share their feelings with those who have experienced the loss of a young person, and be part a network of support for one another. A place where we hope you will feel safe in the knowledge that you are not alone in how you feel. This opportunity is particularly for anyone who wants to communicate with others similarly affected, to help them confront and cope with the emptiness the sudden death of a fit and healthy young friend has left in their lives. Sharing memories of the suffering of a similar loss, exchanging thoughts, feelings and coping strategies, can help find a way forward at a deeply depressing time. The group is private and can only be joined by invitation from CRY. The discussions within the group can only be seen by members, whilst CRY has access to the group as a group administrator, the group is not actively moderated by CRY. CRY also has private Facebook groups for bereaved dads, mums, partners and siblings, as well as another group which can be joined by both family and friends. For more information about the Facebook support groups or to register join please visit www.c-r-y.org.uk/group-support

#CRY4Friends #CRY4Friends is a campaign to highlight the grief felt by young people when they experience the death of a friend. CRY hopes this new initiative will encourage young people to share their memories and to talk openly about their feelings. Every memory shared on Facebook, Twitter and Instagram including #CRY4Friends will appear on the webpage www.cry4friends.org.uk Š Cardiac Risk in the Young 25







Information Anger


Isolation Sadness



Yearning Distress Kindness Reconstruction

Grief Support



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