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 My
husband and I were in Barcelona and our eldest son Simon in Shanghai.
Lucy, our daughter, rushed to the hospital expecting to be told he had broken a
leg. She was only there a few minutes when the doctors came to break the
news to her.
Stuart was a very fit and healthy young man - loved
his lager and pretty young ladies! Throughout his life there had been no
indication that there was anything wrong with his heart. Dr. Mary Sheppard
discovered he had ARVC and had had it for a long time.
How lucky we were to have him for 25 years.
Our local hospital screened us all within 6 weeks of
his dying. It was discovered that our youngest child, Lucy - then 23 years
old - had major signs of it (ARVC) but her older brother Simon - then aged 27
years - had only minor signs and within 48 hours we were at the Heart Hospital
in London.
Lucy was subsequently fitted with a defibrillator
which has saved her life. We were given all the information about CRY at
the hospital and gave all donations from Stuart's funeral to them. 600
people came to his funeral - it brought us a lot of comfort to know how much
loved he was by so many. Our family circle has been broken and our lives
will never be the same again. It still seems unbelievable that this has
happened to us - its always someone else!!!
Genetic testing has shown that both my husband and I
have defective DNA so our siblings and their children have all been screened as
well. Fortunately all seem clear.
I phoned CRY a number of times in the following
weeks and found them so helpful and kind. It is imperative that we raise
the profile of CRY and help to prevent other families going through the agony of
losing a child or a young partner. This is why I now feel I would like to
help by becoming a CRY County Representative.
If you would like to contact one of our
Representatives or a Bereavement Supporter please call the CRY office at 01737 363222 or e-mail cry@c-r-y.org.uk
and we will put you in touch with someone who may be able to help
you.
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