Heel-Prick Test Hope for Family

Irish Sunday Mirror
31 March 2013


‘We Still don’t know why my Rory died .. but this might stop it happening to someone else’


By Adelina Campos
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A mum who lost he son to sudden cardiac death has welcomed the decision to protect heel-prick DNA cards.

Sally Hegarty said the blood samples could one day save the lives of children with invisible disorders – like her late son Rory who died aged 16.

The HSE was last week instructed to reverse a decision to destroy more than a million samples taken from babies between 1984 and 2002.

Sally, 53, told the Irish Sunday Mirror: “Rory died four years ago, he was just a few weeks from his 17th birthday and, as yet, I still don’t definitely know the cause of his death.

“When they did a post-mortem, nothing showed up – his heart was perfectly normal.

“Everything was fine so they had to assume he died of SADS (Sudden Arrhythmic Death syndrome). He had a perfect heart structurally so we still can’t understand what happened.

“But I’m hoping with the heel prick card that holds his DNA, one day we will be able to find out the cause of his death through genetic screening.

“And in that way, I can have my other children screened to check if they have that gene.”

The South Dublin nurse recalled the moment when she found Rory lifeless in their home.

She said: “I went in to call him for school and he had died in his sleep. I was completely shocked. I just couldn’t understand how it could happen to a perfectly healthy child. It made no sense.

“Eventually, through the efforts of the SADS support group, we went for a family screening. My husband Dermot, my two teenage children and I all did a heart screening.

“My children are screened every year now and the more screenings they have, the less likely they are to have the condition but I still don’t’ know they don’t have it.

“Rory’s card has DNA and I know – because it’s been done in other parts of the world since 2010 – they can isolate the gene that caused his death”.

“When that’s done, my other children can be tested and until then, until I know they are safe, I won’t be happy.”

Sally said she was glad that the Government overturned a decision to destroy 1.6 million samples after a campaign led by the Irish Heart Foundation, the SADs group and cardiologist Dr Joe Galvin.

She added: “They made the right call. Out of those samples, some 1,400 deaths will be Sudden Cardiac Deaths so the cards could help over 1,000 families”.


 

Dublin Chamber News

Irish Daily Mirror
4 April 2013

On Saturday Dublin Lord Mayor Naoise O’Muiri will hold the Lord Mayor’s Ball for three charities – the Alazheimer Society of Ireland, CRY (Cardiac Risk in the Young) and the Marie Keating Foundation. Reception for the event sponsored by Fire Restaurant at The mansion House is at 7pm, with dinner at 8pm. Tickets are €100 each. For more information contact This email address is being protected from spambots. You need JavaScript enabled to view it.


 

Newcastle West RFC

Weekly Observer
Wednesday 20 March 2013

Newcastle West RFC are encouraging its members to support a charity event in aid of C.R.Y. Cardiac Risk in the Young) which takes place on Saturday 4 May with an 80k cycle starting at 11am and a 10k walk/run starting at 12 noon from Monagea Community Centre. The parish of Monagea lost two young people, NIamh Herlihy and Darra O’Donovan, to Sudden Adult Death Syndrome in 2011 and funds are needed to raise awareness for this unexplained condition. All members are encouraged to take part or give a donation. For further information contact Clare O’Donovan 085 1458214, Liam Herlihy 087 2998461 or email This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it. . You can also contact Newcastle West RFC on 069 62540.


 

Victory for tots’ tests

Irish Daily Mirror
Comment
27 March 2013


The decision not to destroy blood samples taken from babies born here is to be welcomed.

The 1.5 million newborn screening card blood samples is an invaluable database that could save lives and the Irish Heart Foundation is to be commended for its campaign to block the destruction.

Health Minister James Reilly also deserves praise for stopping what amounted to medical vandalism in the name of political correctness.

The IHF insisted the information in these cards could save the lives of relatives of more than 1,000 victims of sudden cardiac death.

Protection of life must always take precedence over ridiculous EU data protection legislation.


 

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