It was the help of CRY during the first two years of the millennium that our family first learned of SADS and the worldwide scale of families suffering the same kind of loss as ourselves. It is truly tremendous. CRY gave us the answers, information and support that we craved. Just like so many others, we lost two fit and healthy young men suddenly and with no explanation for their deaths.
Firstly, my nephew Ricky Stevens who was 15, just one month short of his 16th birthday, collapsed and died in his bedroom on April 15th 2000. It was the Easter Break, and he was looking forward to a camping trip with friends. He decided to go to his room to listen to music, whilst he waited for a friend to call, but he never walked out again!
Ricky was a wonderful, polite, helpful young man, who had a self developed talent for music. He especially loved to play his guitar, his prize possession at that time was his new dark red electric guitar, although he was quite bashful playing in front of friends and family, once he’d got going he was fine. I am sorry I won’t be listening to him strumming tunes anymore…I miss him. He was too young to die and leave his family so suddenly this way. I think it can be accepted in one’s mind if an accident or illness had occurred but it’s impossible to comprehend when it happens this way! The shock rocked us to the core. It was unbelievable, “Why?” was the only question. Post mortem results were found to be inconclusive, toxicology tests negative, biopsy’s concluded nothing. No one could tell us why, or what had happened, nothing. They said unfortunately sometimes these things happen. The body shuts down. It was so unfair, he had everything to live for, he was just about to start living an adult life, and was looking forward to the new found freedom that would bring.
Within a year and a half, on Thursday 20th December 2001, my youngest brother Jason, while out enjoying a beer with friends, collapsed and died. Just as Ricky had done.
Jason was 22 years old. He had not been ill or complained of feeling unwell. Although he had expressed how tired he’d felt at work during that day, he had not struggled with his tasks. He had decided to have an early night, however, a friend called and talked him into a couple of pints at the local. His friend had broken up for the Christmas Holidays, though Jason had work the following day, decided to go for the first couple of hours. He left at 7pm, by 9pm that night he was dead. He had only 2 pints and didn’t even want to stay to finish the 2nd, he told his friends he wasn’t feeling well and wanted to go home, they agreed to leave soon, his friend was on the fruit machine, Jason was beside him, suddenly he fell flat on his back, no warning. I feel for his friend, it was obviously an unimaginable, traumatic experience for him – his hurt runs very deep; I am glad were are still in touch. Jason was probably the most physically fit among them. He never smoked, ran regularly, used weights and played football; his job was physical. There simply was no warning – CPR was attempted immediately, the medics were prompt with their arrival. He was pronounced dead on arrival at New Cross Hospital.
Post mortem results were inconclusive, we were told to wait for further tests and investigations to be carried out. Again, these all proved to be inconclusive – history seemed to be repeating itself. I hoped they didn’t expect us to accept that “unfortunately these things happen” a second time. After we explained to the coroner about Ricky, she had in turn explained our situation to the pathologist, who requested permission for Jason’s heart to be referred on to a specialist in London, as there was nothing left to investigate. We were assured a specialist would be able to tell us why Jason had died.
Again the results were inconclusive, the specialist confirmed all was normal. It was then that our family were invited to the hospital in London to go on a gene fault finding programme. We underwent a series of tests, and all wore a 24 hour heart monitor – this records your heart movements. They wanted to see if there was any hint of a condition called Long QT. This is a genetic condition, inherited electrical defect of the hearts rhythm, it can only be detected in the living.
Our mother showed signs of this condition, and was already on a beta-blocker. My sister was advised to take a beta-blocker as a precautionary measure. Her remaining sons will undergo regular monitoring, if any significant changes are visible they will also be prescribed beta-blockers, as this condition is easily treated and sudden death is preventable. In serious cases a defibrillator can be fitted under the skin.
It is known that two of my mother’s siblings have lost sons and grandsons. We have endeavoured to ensure that all relatives of my mother’s bloodline are aware of Long QT being evident in the family and hope this does not happen again.
There was never a doubt in our family that Jason and I were the closest siblings. They say the eldest and youngest share a special bond. I had gone to hospital within a few hours of his birth. I was seventeen, and still remember holding him for the first time. I had watched him grow into a considerate, well-liked young man with many friends, many of whom were 10 years older than he – as he had an older well balanced wise head on his shoulders – who didn’t suffer fools gladly. He had worked hard ever since leaving school, he enjoyed playing football at weekends and love to sit in the pub. Jason always had a friendly smile, a beer and easy conversation with his friends. Everyone who knew him, loved him. He was a fiercely loyal friend, a knight in shining armour for some, a loving son and simply the best, best wee brother in the world.
He touched everyone’s heart who met him with his respectfulness, sincerity and sense of fairness…I miss him terribly.
An expression of my feelings
Jason I will miss you for the rest of my life, you were the best wee brother in the world,
Who became my friend, and I didn’t realise it at the time, you were my rock.
I think of the things you said or did with almost every passing day, its not just me who
Misses you, its everyone who knew you, especially your closest friends Si, Nick and Proc.
I don’t know if I will ever get to know the reasons Why?
I only hope you’re standing somewhere near, when its my time to die.
You will always be in my heart, your big sis….Caroline X.