It's a fact that every week in the UK eight "apparently" healthy, fit, young people die from undiagnosed heart conditions.
CRY (Cardiac Risk in the Young) is the organisation that exists to raise awareness of this fact and to help young people and families who may be affected by a range of potentially life threatening heart conditions.
Rebekah Goddard from Shaftesbury suffers from Long QT Syndrome and in July last year, she travelled to Westminster to attend a very special event organised by CRY.
As part of its awareness week CRY hosted a reception attended by more than 50 MP's who were there to show their support for the group and its work. Hosted by MP Dari Taylor, the parliamentary reception was held in the terrace marquee alongside the Houses of Parliament and proved to be a huge success in promoting CRY's work in Parliament as well as with families who have lost children and in its support of the "survivors."
CRY also took the opportunity to welcome its newest Patron. Having completed his cross-channel swim (in a little over 10 hours), the previous day, everybody was delighted to welcome David Walliams of Little Britain fame to the CRY family. He joins an impressive list of patrons who also include Ian Botham and Sir Steve Redgrave who all believe very strongly in CRY and the work it does.
Rebekah, who lives in Shaftesbury with husband and daughter Grace, is now expecting her second child. It was just prior to her wedding 2001 that she was finally diagnosed with Long QT Syndrome, as Rebekah explains:
"In 2001, just two months prior to my wedding, I was diagnosed with a condition called Long 'QT' Syndrome. The condition affects the electrics of the heart, rather than the physical heart itself, so is very difficult to spot with the usual heart tests.
I later discovered that if you know what you are looking for, it can sometimes be detected on a simple ECG machine, as it was with me. I had suffered many so-called "panic" attacks through my early teens, which I was told later were the early signs of my condition coming to fruition. I later suffered massive seizure type fits, which would last for hours, baffling paramedics, doctors and A&E staff. After a series of inconclusive tests, I was told that there was a high probability6 I was an epilepsy sufferer. I remained very disturbed by this as it made no sense to me at all, but it was the only diagnosis that I received.
In July 2001 my husband was forced to dial 999 and watch as emergency services took me away once again to hospital. It was during this time in hospital that I was given epilepsy drugs, which triggered another attack. This time medical staff witnessed the entire thing and spotted me clutching my chest. they managed to record the whole event on an ECG machine and the readings they received finally gave them a diagnosis, which made sense.
I was later informed of the horrifying fact that more than 95% of female sufferers of my type of Long 'QT' Syndrome do not survive their first attack.
It's my father that I have to thank for being here, as he discovered my lifeless on the bathroom floor, at the age of 18, and resuscitated me. I now live a fairly normal life, with a few small exceptions. but I have a lot to be thankful for.
My wonderful family have all been fantastic, but it was with the help of CRY that I was finally able to come to terms with what had happened to me. It was CRY who invited me to meet other young people under the aged of 35 who were all "living with similar conditions.
Finally,. I felt that I was not alone. They6 also put me in touch with one of the country's leading experts in Long 'QT' Syndrome, Dr Sanjay Sharma, Director of heart muscle disease at King's College Hospital, London. He answered so many of my questions that up until then remained unanswerable.
At the end of the day, it's all about raising more awareness of these conditions, not just in Parliament, but also in hospitals, schools and coroners, who deal with the problem of findings answers."
