When factory operative Michael Bowe consulted his GP about the flu-like symptoms he just couldn’t seem to shake, he was a bit surprised to be sent to hospital.

And utterly shocked, when, within two days, he was informed that he needed a heart transplant. Michael, then just 24, was told that he had cardiomyopathy, a condition in which the heart becomes enlarged, thick or rigid.

That was in September 2000, and the news sent shock waves across his family.

“It came out of the blue. I don’t know if we really took it in that Michael needed a heart transplant. It was not until he was undergoing tests in Dublin that the penny really dropped for us,” recalls his brother Damien.

Michael had his much-needed heart transplant in February 2001, but his body rejected his heart, and he died suddenly three years later. It was a terrible shock to a family which had already experienced tragedy in 1998, when Michael’s younger sister was killed in a car crash. Michael’s family were later tested for heart problems by the Mater Hospital’s Family Heart Screening Clinic.

The clinic checks families of those who have been affected by or who have lost loved ones to cardiac conditions, including Sudden Adult/Arrhythmic Death Syndrome (SADS). Almost 9,000 people have been screened for often hidden and potentially fatal diseases since the clinic opened in 2007 – and this figure includes 60 children as young as eight years of age, who have been screened in the last year at the clinic, which this year celebrates its 10th anniversary.

Breda Bowe, Michael’s mother, now aged 64, was diagnosed with cardiomyopathy following screening at the clinic, and had a defibrillator fitted.

Michael’s younger brother Fintan, now aged 23, was also found to have the condition and is now on medication for it. Damien and his father Pat, however, were given the all-clear, as were Damien’s three young sons, Iarlaith aged two, Ruairi five, and six-year-old Patrick, who were screened at the clinic in recent months.

Breda also underwent genetic testing which revealed that she is the gene carrier of the deficiency that leads to cardiomyopathy.

“For us, the screening at the clinic was critical,” recalls Damien, from Timahoe, Co Laois, who points out that Fintan is an enthusiastic hurler.

“Without the screening I believe he could have died suddenly of Sudden Adult Death Syndrome because he was completely unaware that he had the condition until he was screened. He’s now on medication and attends the clinic for screening every six months.

“My mother had a defibrillator fitted as a result of the screening.

“I believe the screening saved the lives of my mother and brother,” says Damien, who adds that knowing their three children have been screened is a massive reassurance to himself and his wife Anne-Marie, a nurse.

The Bowes are fully supportive of this year’s Heart Appeal to raise €95,000 for the purchase of a new ECHO machine for the clinic. This technology will provide much clearer images of the heart and lead to better diagnoses of often hidden cardiac problems into the future. The appeal also funds pioneering research into the causes and treatment of the disease, and with one person under the age of 35 passing away from an inherited cardiac condition every week in Ireland, such state-of-the-art screening technology and ongoing, in-depth research is badly needed.

This is an abridged version of an article which appeared in the Irish Independent on 21 February 2017. Image of heart testing above is an example of the service for patients and not connected to the Bowe family.

Donate Today to help save lives across Ireland through the purchase of a new ECHO Imaging machine. Your help is needed now more than ever as we aim to reach €95,000.

Finding out I had a hidden heart condition wasn’t easy. But finding out that this potential killer might also affect my four children was much more difficult.

I also know it could have been so much worse. I could have found out when it was too late. That would have been devastating. Sadly, for families from all over Ireland that’s exactly when they discover this hidden killer.

My daughter Laura and her brother Charlie were the first children to undergo screening at the Family Heart Screening Clinic at The Mater Hospital. In fact, all four of my children were screened there – Charlie, Laura, Mark & Kevin. Unfortunately, three out of the four were diagnosed with Long QT Syndrome, the same life-threatening condition that was discovered in my own heart. I dread to think of what could have happened if our conditions had gone undetected.

Charlie is too young to understand. But Laura and her older brother Mark have a better understanding of their diagnosis. Laura puts on a brave face, but early on we noticed she doesn’t like anyone to see her taking her medication. Her best friends know about her condition but it’s not something she likes to talk about. She keeps it all very quiet. I think a huge part of why is that she’s frightened.

But knowing that she has Long QT is critical because it’s only then that doctors can take the steps necessary to prevent her heart from stopping. Since she was diagnosed Laura’s school has had a defibrillator fitted. Having that on-site is crucial if anything were to happen to her.

Of course, I wish none of my children had to go through this. For the most part we try to carry on with life as normal. We know the amazing medical team at the Family Heart Screening Clinic are doing everything in their power to ensure my children and I live long and happy lives. You see we can’t change the diagnosis of Long QT, but we can treat it.

My children can have a normal life, they can dance and play sport. And I can have peace of mind knowing that everything possible is being done to protect their precious lives.

I’m hoping that you’ll help the Mater Foundation protect families like ours all over Ireland. With our help they can reduce the number of families left devastated by Sudden Cardiac Death.

Any gift you can give today will bring us closer to ensuring doctors at the Mater Family Heart Screening Clinic have the best equipment possible to help save lives.

Thank you for taking the time to read my letter today.

Brendan Byrne.

Little Laura Byrne and her brother Charlie were the first children under 14 to be screened at the Family Heart Screening Clinic, in February 2016. Many more children have been screened since and in the future the clinic hopes to test children as young as 3 years of age.

This February, we need to raise €95,000 for a new ECHO machine to take clearer pictures of the heart, and this is essential when screening children’s hearts, as they beat faster and are smaller, so the ECHO is really essential for quick and detailed diagnoses.

Support the Mater Heart Appeal by donating online or get in touch through email or call us on (01) 8303482 – you can be the difference for families just like the Byrnes.

10 years fighting inherited cardiac conditions was only possible because of supporters like you. 

The Family Heart Screening Clinic was set up to reduce the number of tragic deaths due to inherited cardiac conditions and has resulted in almost 9,000 people being screened at the Family Heart Screening Clinic since Cardiologist Dr. Joe Galvin sought support for it in 2006.

From the infographic you’ll see just how far the clinic – and indeed the level of care – has come. Just last year, for example, the clinic started screening children’s hearts (those as young as 8), and in the future is looking to test children as young as 3 years of age. The clinic is also involved in research into the underlying causes of inherited cardiac conditions, which is absolutely necessary if their prevalence is to be understood in Ireland.

This February, the Mater Foundation wants to take a big step towards that target by raising €95,000 for a new ECHO imaging machine that will allow clearer images of the heart to be taken. The Mater Foundation’s supporters got us there in 2007 when the clinic opened, and we hope you’ll help us once more this month to make it a reality.

To support our Heart Appeal, please get in touch with us at heartappeal@materfoundation.ie or donate online to make another incredible difference to those most at-risk of sudden cardiac death.

And if you’d like to learn a little more about the Family Heart Screening Clinic’s amazing work, why not watch our animated video below.

 

Heart Appeal 2017 – Why We Need You from Mater Foundation on Vimeo.

February 1st 2017 marks 10 years of life-saving work at the Family Heart Screening Clinic which screens families of those who have been affected by or who have lost loved ones to cardiac conditions such as Sudden Adult/Arrhythmic Death Syndrome (SADS).

Almost 9,000 people have been screened for these often hidden and potentially fatal diseases since the clinic opened in 2007, including 60 children as young as 8 years of age in the last year

Funded almost entirely by The Mater Foundation, the official fundraising body of The Mater Hospital, this year’s Heart Appeal aims to raise €95,000 to purchase a new ECHO machine which will provide much clearer images of the heart and lead to better diagnoses of often hidden cardiac problems into the future. The appeal also funds pioneering research into the causes and treatment of the disease.

With one person under the age of 35 passing away from an inherited cardiac condition every week in Ireland, many of these families have lost those youngest and dearest to them.

Speaking at the launch Jim Gavin, Manager of the Dublin Senior Gaelic Football team, said, ‘The death of any young person is heart breaking and devastating but we hope that by coming together with our fellow sportsmen we can show our support to those families who have been impacted by SADS and highlight and help raise critical funds to assist and sustain the vital work being carried out at the Family Heart Screening Clinic by Dr Joe Galvin and his outstanding team’ – Jim Gavin, Dublin GAA Football Manager.

Also in attendance at the launch was Stephen Kenny, Dundalk FC Manager who commented, “Dundalk Football Club has been directly affected by inherited cardiac conditions and we have seen the devastating impact on players and their families. I am happy to lend my support to the Mater Foundation’s Heart Appeal to fund new equipment and research into the causes of SADS and other heart diseases”  Kenny was joined at the launch by and two of his defenders, Sean Gannon and Dane Massey.

This year, families who have lost loved ones, and others who have had family members potentially saved through the use of such interventions such as defibrillators and medication, are sharing their stories to highlight 10 years of life-saving work.

“New investment in equipment is critical to ensure that The Family Heart Screening Clinic remains at the cutting edge of technology and supports pioneering research into the causes of a disease that affects young people in their prime” says Dr Joe Galvin, Consultant Cardiologist. Dr Galvin who set up the clinic ten years ago and has been leading the team ever since adds, “The clinic has saved many relatives identified as being at high risk of a life threatening arrhythmia and these have been protected with lifestyle changes, medications or an implantable cardiac defibrillator. It has also played a key role in research into SADS and other inherited cardiac conditions which is crucial if these conditions are to be mapped and their prevalence fully understood in Ireland.”

The clinic receives limited government funding and is dependent on The Mater Foundation and the generosity of the public to purchase new essential equipment and fund research.

Mary Moorhead, Chief Executive of The Mater Hospital Foundation adds, “After ten years, we now require new equipment to allow us to update the service, to continue to test for potentially life-threatening conditions that families might not otherwise have known about and to support research. We are appealing to the general public this February, the month of the heart, to lend us their support and help us to raise funds for an ECHO scanner. This will allow us to continue the important screening service into the future and help us prevent the deaths of our young people from SADS. As we have started testing children as young as 8 years of age, now more than ever, this new equipment is vital.”

This year donations to The Mater Heart Appeal can be made online at www.materfoundation.ie, or by calling the office on 01 830 3482. You can also lend your support by selling heart badges in your local area to help reach the fundraising target. For more information contact the Mater Foundation on 01 830 3482 or email heartappeal@materfoundation.ie