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'Vital' health charity in funding appeal

 

Flintshire and Chester Standard - 11th December 2003

 

Lives have been saved after a screening session was held in Flintshire to detect heart abnormalities. 

The testing session, to spot potentially lethal defects, was organised by local campaigner Doreen Harley, at the Beaufort Park Hotel, near Mold. 

The screening, which saved two lives, also has the backing of Alyn and Deeside MP Mark Tami. 

He said: “This is cast-iron proof that screening saves lives.  The campaign to bring this facility to North Wales is clearly already paying dividends.” 

The screening was funded by HJ Heinz Charitable Trust, in memory of Mrs Harley’s daughter, Lisa Jane Browne, 27, who died in 1998 from Sudden Death Syndrome. 

Since then Mrs Harley has campaigned to hold screening sessions in North Wales in a bid to save other people’s lives. 

And she has proved it can help, even within her own family.  After Lisa’s death, she and her husband, Terry, were both screened, and it was found Terry has Long QT Syndrome, the condition that was responsible for daughter Lisa’s death. 

Doreen’s surviving daughter, Rachel Willn, and grandchildren, Jack and Adam, have also been screened, and both Rachel and Jack have been diagnosed as having Long QT Syndrome, with DNA results still not yet available for Adam. 

Rachel was fitted with a pacemaker last year, which saved her life when Adam woke up screaming one night.  The pacemaker kick-started Rachel’s heart back into rhythm. 

A total of 40 people attended the second North Wales mobile cardiac-screening event. 

The screening team was headed by cardiologist Dr Jayesh Makan, and 40 people from Flintshire, Chester and Wrexham, aged between 14 and 35, attended the session. 

Earlier this year a similar screening session was held and five people were found to have heart abnormalities. 

Mrs Harley said: “each had an ECG tracing to look at the electrical system of the heart, an ECHO ultrasound to look at the muscle and heart flow within the heart, and a consultation with the cardiologist.” 

The results have been released and two people were found to have heart abnormalities.  They are now receiving treatment. 

Mrs Harley said she did not know who the two individuals are because of patient confidentiality. 

She said: “it was a good cross-section of people who took part.  The two who were found to have a problem are now receiving treatment and will be fine.” 

But the service is under threat. 

The screening sessions cost just £7,000 and are free to people who apply for them, but unless sponsors are found they will not go ahead this year. 

Mrs Harley said: “The money has simply run out.  It’s very frustrating.  These screenings have saved lives.  They have saved the lives of seven young people.  They have saved the lives of one of my daughters and her two children. 

“Unless we get the funding we cannot save more lives.” 

Alyn and Deeside MP Mark Tami said he would take up the fight, saying he was shocked to hear CRY has no funding to continue its work. 

The charity offers help, support and counselling to families where there has been a sudden cardiac death of an apparently fit and healthy young person, otherwise known as Sudden Death Syndrome. 

Mr Tami said it was vital CRY continues its work. 

“This is a very important service being provided and we need to make sure there is the proper support for it.  I will be seeking support and asking for it to be made a frontline service.  Whatever support we can give to CRY could help and much is needed.  We don ‘t want to lose this vital service,” he said. 

 

 

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