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 I
was helping with the meals when my eldest daughter came through the doors with a
policeman. My first thought was she’d had a car accident although she wasn’t
hurt, or her dad had been involved in an accident on the motorway.
Nothing prepared
me for what they were to say; “Mum, it’s Paul; he collapsed and died this
afternoon”.
The policeman
then told me that Paul had been seen riding his cycle in the school playing
fields when he “just fell off and never got up”.
There was a P.E. teacher on the
field at the time, the school children called out to him to help and an
ambulance was called. Paul was taken to Selly Oak hospital but was pronounced
dead on arrival.
He had died when he fell off his
bike but the teacher and the ambulance crew tried in vain to save him. I
couldn’t understand why he was at the school as he wasn’t a pupil there; but his
best friend was and he had gone to meet him. James and Paul where in the Air
Training Corps together and where best mates.
Paul’s dad came home that night
quite unexpectedly and had to be told about Paul. We then went with the police
officer to formally identify Paul. We couldn’t take it in, there was our son
laying in a room looking as if he was fast asleep, we couldn’t understand how he
could have died, he had never been ill.
A post mortem revealed that Paul had
died of a condition called ARVD - Arrhythmogenic Right Ventricular Dysphasia.
Paul’s heart muscle had changed to fibrous tissue and fat, “like a time bomb
waiting to go off”. The coroner said the pathologist had only seen 1 case in 23
years it was a rare condition. We still couldn’t get our heads round what all
this meant and just didn’t know what to do next.
How could this be though; Paul was
healthy, he was in the Air training corps, he went flying, camping and they were
always out and about. He was training to be a mechanic at college, his dream was
to be an aircraft mechanic in the R.A.F. and he had never shown any symptoms of
being ill. This news just devastated us all.
The story of Paul’s death was in the
local papers, and a man called Roy Ball came round with a leaflet about CRY. I
still didn’t think anyone could help us as we were told Paul’s condition was
rare. After the funeral and when things were supposed to get back to “normal” I
read the leaflet and saw that there were 11 heart conditions that were killers,
and ARVD wasn’t on there.
I phoned the office and explained
what had happened and they told me that Alison Cox would phone me straight back.
This she did and when I told her Paul’s story she said ARVD was now known as
ARVC - Arrhythomegenic Right Ventricular Cardiomyopathy - and the condition was
not rare at all. I was then asked to get my family screened as this was a
hereditary condition, something that had not even entered our minds.
We were screened at our local
hospital - my daughters, their dad and me were told we were OK and discharged.
We started to rebuild our lives as best we could. Nicola had the chance to go to
Majorca for a holiday with her friend’s family - we wanted her to go and enjoy
herself (she was 18 the week before Paul died). She hadn’t been there many days
when her friends mum phoned and said that Nicola had been taken to Palma
hospital with chest pains after swimming.
We were frantic - we hadn’t got
passports to even fly out to her. The holiday rep phoned us to say that Nicola
was having a lot of tests done due to her losing her brother earlier in the
year. We were given a phone number to ring Nicola every day as she had to stay
in hospital for a week before being well enough to fly home. Again I turned to
CRY, how could this happen after we were told we were fine and what could we do
when she came home?
We were asked to get a another
referral, this time to St George's Hospital in London to see Professor McKenna’s
team, this seemed to take a life time but eventually we did. We all went
down for the day and had loads of test done - ECGs, Echocardiographs, X-rays etc
- we were told the results at the end of the day.
The results were staggering - Nicola
and myself were diagnosed with ARVC and we were given medication straight away.
Lindsey was all clear but she did carry the gene. Their dad was also given
the all clear. We were told that we would need to go yearly for follow up
appointments and 6 monthly appointments at our local hospital. My 3 sisters were
asked to go for tests too, and 1 of them has been diagnosed with ARVC - this
disease is a hereditary condition.
Nicola was 23 when she started to
show symptoms of ARVC. She started to have dizzy spells on exertion. I spoke to
one of the new Cardiologist consultants at our local hospital about Nicola's
condition and that I was worried. She was asked to go and have a treadmill test;
but she didn’t get to start the test, she was taken straight to Coronary Care,
her heart rhythm was going out of control. She has now been fitted with an ICD;
this is to stop her having a cardiac arrest if ever her heart goes too fast and
stops.
I don’t know what I would have done
if CRY hadn’t been there for us and the thought of losing another child is just
unthinkable but if I hadn’t had CRY's support I would have believed that we were
OK after the first family screening.
Meeting other parents who have
suffered losses through sudden death syndrome has helped enormously, they know
what you feel, they have been through everything you have; knowing you are not
alone is some comfort.
I have been asked to be a county
representative for CRY, and this I hope I can do well. CRY were there for
me when I didn’t know what to do or where to go. If talking about CRY,
supporting CRY, saves another family going through the pain of losing a child
then I feel Paul did not die in vain.
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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