One weekend. 49 kids with heart disease. Lots of play

The Irish Heart Foundation’s Happy Heart appeal needs you – please help make genetic heart disease less traumatic for kids

Nicholas Bowens (9) and Graham Bowens (12) from Kildare: this year’s Happy Heart public appeal is on Thursday, May 5th, and Friday, May 6th

Last April I almost died from a massive heart attack. I wrote an article in this newspaper about my experience. I was asked to go on the Ray D'Arcy show on RTÉ Radio to talk about it. It was a Tuesday and a listener felt concerned enough when he heard me describing my symptoms to phone his GP immediately as he had been experiencing similar symptoms.

He met his GP on the Wednesday and was booked in to do a stress test (which indicates if you have heart disease) in a hospital on the Friday. Because of the results, on the same day he had an angiogram and two stents inserted into his arteries.

The listener emailed into the show the following Monday; the subject line of the e-mail read: “The Ray D’Arcy Show Saved My Life”.

But it’s not only adults that need to talk about heart health. Children who have inherited heart disease need to talk about it too. They have this condition as a result of a single faulty gene. It has nothing to do with lifestyle or diet. It means they cannot play normally with other children. A game of football or running around in the park is out of the question – any form of play carries risks.

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To allow children with this disease to talks and play as children should, the Irish Heart Foundation runs play weekends in Barretstown's camp for children.

Last month 49 children with inherited heart disease could play for two whole days in a safe environment. And they could talk to each other and share stories about their condition – vital in reducing the isolation and worry they sometimes feel.

For their parents too, these weekends are important in meeting up, exchanging phone numbers and email addresses and having someone to talk to about doing your level best for a child with this disease.

The next kids' camp at Barrettstown will take place in November. Two weekends of children with this disease being able to play normally is a start, but can you honestly ask any child to confine themselves to just four days of play a year?

The heart foundation relies on public donations for 92 per cent of its income. It needs to be able to pay for more kids’ camps, as they need to be able to work more effectively in prevention, research, resuscitation, care and support.

Every year they it runs a Happy Heart public appeal – this is on Thursday, May 5th, and Friday, May 6th, this year. All you have to do is buy one of their Happy Heart badges for €3.

But here’s the thing: nobody will be able to buy the badges unless there are volunteers standing out in the street, going around their workplace, hitting up the sports grounds and sweeping through pubs with trays of the badges.

This year in particular people in Dublin are proving very reluctant to volunteer but it's really quite simple: call the Irish Heart Foundation on 01-6685001, email happyheart@irishheart.ie or see irishheart.ie or their Facebook page. You can also donate €4 by texting HAPPY to 50300.

Providing more camps for children with inherited heart disease is not a solution – but it will help while we’re waiting for one. Isolating those genes responsible for the inherited condition is an ongoing global project and already we are seeing improved genetic tests.

An early diagnosis can mean the difference between life and death for a child. And just as with children, adults get heart disease for reasons beyond their control. If you’re male and have a family history of heart disease you are at risk no matter what your lifestyle, diet and exercise levels are like. Talk about it.