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Mum found it very hard to explain to us how
someone could die like that. It is scary enough for adults to accept and
parents try to protect their children from the horrors of life.
Two years later, just when we were
rebuilding our lives, there was a programme by Panorama about Sudden Death
Syndrome. In it a man called Professor William McKenna explained that
young people were dying like Dad did and that it could be prevented and
the biggest bombshell that hit Mum was that it was also HEREDITARY!
No-one had told Mum this.
About the same time, Dad’s brother called
to say that his son had been ‘blacking out’ at school and that he had
been found to have a cardiac condition called Long QT Syndrome, a cause of
sudden death. It was also discovered that Dad’s brother had it too.
Mum decided that we were going to get
tested for this. She did not realise just how difficult this would be. She
wrote to Professor McKenna who phoned her as soon as he got the letter. He
offered to screen us but we had to be referred by our GP. Mum rushed off
to speak to the GP who agreed that they should be screened even though he
didn’t really know much about Long QT. He didn’t think our local
hospital would know much about it either and said he would refer them to
Professor McKenna. Unfortunately, the health authority had other ideas.
They decided that as we were not a medical emergency we could not be
referred out of the area. Mum tried to explain that when we reached the
stage of medical emergency we would probably be dead.
This fell on deaf ears. Mum even hijacked a public meeting they
held, and they knew who she was!
Within a week we had an appointment at the
local cardiology unit. This had taken two years. During this time
Professor McKenna had introduced us to CRY. He is a patron. CRY had helped
Mum to understand all about Long QT and given her support and
encouragement when she felt that she was fighting a losing battle.
We were tested which involved a 30 second
ECG. We were found to have an elongated QT interval, but the cardiologist
didn’t think it needed treating. With our family history that was almost
laughable. Mum phoned CRY, Professor McKenna phoned the cardiologist, and
the hospital phoned Mum to tell her to bring us in the next day as we
needed to be put on Beta-Blockers.
Not long after this Danii-Marie started
having ’black outs’. This is like fainting only it is caused by the
heart actually stopping. We went back to the hospital to appeal for a
defibrillator implant. No joy, they upped the dosage of the Beta-Blocker.
We were given check ups every six months and every time we were asked if
we had any questions we replied, ‘Can we have a defib please’. Danii-Marie
‘died’ five times before the cardiologist said he would see what he
could do. On 21st October 2000 we received a letter offering us
AICD implants. On 28th November we finally got our dream. We
haven’t looked back.
Dad died in 1994 and six and a half years
of constant battling later we were allowed to start living. Without CRY it
would have been so easy for Mum to give up. She wouldn’t have had the
information she needed to know that the doctors were wrong. You trust them
to know what’s best.
Now we can do so many things that we
couldn’t do before and fully intend to live life to the full, but in the
meantime we are very happy to give one year of our now hopefully long
lives to help others who find themselves facing the long haul.
They will not be alone.
THANK YOU CRY.
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