Seán

sean

My son, Seán, died of SADS in the early hours of 17 October 2010, at home. He was 19 years old. His mother, Pauline, and his sister, Susanna (aged 16 at the time), were away for the weekend. It was a strange and terrible day, and it kicked off what has been the strangest few years of our lives.

We are a close family – we supported each other in a time of raw emotions and disbelief, and we had wonderful support from extended family, neighbours, friends and our local community. Sean, of all people, had seemed much too alive to die, yet we found ourselves living through his wake and funeral, and the aftermath – as well as the concurrent ‘Big Freeze’, which made everything seem even more unreal.

It was particularly difficult for Susanna, who had just entered her Leaving Cert year at the time of Sean’s death. She coped then and has coped ever since – she is now in France, in the third year of a degree course – but coping took its toll, as it did on Pauline and me. Pauline went back to work very soon after Sean died, and I continued with my freelance editorial work from home, as I still do. Just getting around was extremely difficult that winter – we live in a fairly remote rural area. The world seemed to have lost its bearings. As Bob Marley sang in a song that Sean loved, everything had changed – nothing remained the same.

Contact with CRY was hugely helpful for us. There was the relief of being screened for potential heart problems and given the ‘all clear’; also, the cause of Sean’s death was explained clearly to us for the first time. Susanna in particular has benefited from ongoing help and support from CRY, which is a wonderful organization.

For me, coping included writing a blog and songs. Pauline ‘bought into’ what I was writing, and found it helpful. She and I often sang some of the songs together in the evenings. Sean’s birthdays and anniversaries have been emotional, although really we think of him all the time – if he is not at the front of our minds at any given time, then he is certainly at the back of them. For his 21st birthday we organized a night of music in the local pub, at which some of Sean’s and our friends and local musicians performed. It was a great success, and we raised some money for CRY.

Other people move on with their lives, naturally – Sean’s friends, for example. It has been more difficult for Sean’s girlfriend, Clio, and for us. On some levels we move on, but on others we do not, and never will. But we don’t feel sorry for ourselves: we know that many other people have had to face equal, or even worse, trauma.

Healing takes a long time, and can only be partial. Heartache persists. We love Sean, and Sean is gone – though often we feel that he is still around, watching over us and helping us when we need help. I certainly feel that way. We are still standing, and we are resilient.

Brendan O’Brien – 20th September 2013

The O’Brien Family featured on Nationwide on 18th September-http://www.rte.ie/player/show/10199932/

You can also watch Brendan’s song “Seán and Clio in the snow” http://www.youtube.com/watch?v=niTFyZmZg1I

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website.

The CRYP Screening Centre…Not Just Any Screening Centre

One of the main forms of fundraising within CRY is done by the families throughout Ireland that have attended the Free Screening Service in the CRYP Centre in Tallaght Hospital.  One of the main reasons these families fundraise for CRY is because they have received such a brilliant service in the centre, that they feel they want to give back to say thank you and to also ensure that this vital service is kept open. Not many people know about the ins and outs of the CRYP Centre, so I thought I would write a few lines on it this week.

The centre is run by Consultant Cardiologist Dr. Deirdre Ward, along with her support team Helen Connaughton (Clinical Nurse II), Alison Storey (Cardiac Technician) and Deborah Blackburn (Administrative Support). One of the things that I constantly hear from families that I meet is that they receive such a warm reception in the centre and that it is different to a lot of other hospital visits you might experience. This is so lovely to hear as many of these families have been through a lot as the result of loosing a young person at a young age to SADS so really need to be treated with kid gloves.

The team at the CRYP Centre tries to facilitate families by seeing all of them within the one day if possible as a lot of them are travelling up from different parts of the country. They are put through a wide range of tests (details are on http://www.cry.ie/index.php/need-help/cryp-screening-centre/cardiac-screening-tests) and once everything has been completed, they are given their results at the end of the day by Dr. Ward. This is one of the most comprehensive screening services you will find in Ireland that is lead by such an experienced cardiologist and the great thing about it is that it is free. Unfortunately though, there are waiting lists because of limited funds. However, if we in CRY work towards increasing the fundraising we do, this would mean the waiting lists would be reduced and patients will receive an even better service than they are already receiving.

Orla Durkan, CRY Ireland.

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website.

Lucia Ebbs of CRY – My Story

I have worked with Michael Greene, Chairman of CRY since the late 80s.  I was his PA in HomeBond.  I was working with Michael when his son Peter died suddenly in 1996 and saw the heartbreak and devastation it caused. When Michael and Marie started up CRY I did the paperwork & admin to help.

It became personal to me on 22nd of May 2002 when my niece Jenny O’Riordan died suddenly.  Jenny (Jenny Jewel to the family) was my sister Kate and her husband Jerry’s only daughter.

Jenny had spent one summer in HomeBond – she called it her ‘summer job’ in her gap year.  Michael got to know Jenny well and he supported her after she returned to college and completed her Masters.  She went on to work with KPMG (now known as BearingPoint) and spent two years there as a Consultant and loved every minute of it making great friends. She particularly loved the location and couldn’t have been any happier there – unless they could have moved closer to Grafton Street for the endless shopping.  BT must have had a drop in cosmetic sales that summer!

Jenny died suddenly on 22nd May 2002 from Cardiomyopathy on her father’s 50th birthday.  I will never forget the call – I was just in the door from a holiday and Kate called to say Jenny had been taken to Blanchardstown Hospital.  I collected Kate and we drove to the hospital but I think I knew at the time that she would be dead when we arrived, she was.   Jenny had died while sitting with her best friend Sinead O’Brien– looking at booking flights for a holiday. 

Jenny’s sudden death devastated all of our lives but especially Kate, Jerry and her brother JJ – she was 26, beautiful, bright, kind and had so much to live for.   Her friends and colleagues were heartbroken too.  Time helps you to live with it but you never forget.  Nothing is ever the same and no family event or occasion happens without you knowing someone is missing. Kate now works as a Volunteer with the Charity and will support families affected as she has been.

After Jen’s death Deirdre Hanley of BearingPoint visited Kate at home to sympathise and told her they wanted to do something positive to remember Jen – after that visit we discussed it and Michael met with Deirdre Hanley and CRY’s website was born – BearingPoint still generously host our website and the family take great comfort from that.

I look after the day-to-day admin at the office in the CRYP Screening Centre in Tallaght dealing with families who approach us for help, support or to offer to fundraise.   I understand a little where they are coming from – every story is different and every time I take a call from a bereaved family I understand a little of where they are coming from. 

My own three boys are patients in the CRYP Screening Centre so I understand the concerns of a parent who needs to come to the Centre for screening and the peace of mind that comes with that visit.

Dealing with a bereaved family does not get any easier with time but I hope we are helping families to get some peace of mind and to come to terms with their loss.

Jenny

Jenny O’Riordan

1975-2002

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website.

 

 

                                                                              

What exactly is SADS?

Aside

What Exactly is SADS?

As part of my job in CRY I visit a lot of schools, universities, workplaces and community centres to educate people on Sudden Adult Death Syndrome (SADS) and the work that our charity CRY does. I find on my visits that a lot of people are not quite sure what is involved when someone dies from SADS. So I thought this would be a good topic to talk about and I promise to keep this as simple as possible. I am not a medical professional either so I will have to keep it as simple as possible!

The best way to describe what happens to the heart when someone dies from SADS is to compare it to when you switch off a light – the heart literally stops. It’s not like a heart attack, which can be more gradual. It is for this reason that the person has very little time to be resuscitated by a defibrillator. I suppose another comparison would be to a car battery. You need that jolt from the defibrillator to get the heart going again. Unfortunately a defibrillator does not always work and mouth to mouth resuscitation does not work in this case. Even so, it is so important for defibrillators to be available in as many public places as is possible to give an individual the best chance of survival.

A lot of young people who die from this seem to be normal active people. But there are symptoms that you can look out for- chest pains, palpitations (please note these are very common and can be caused for a variety of reasons), fainting and seizures during exercise and shortness of breath during exercise. But the biggest thing to look out for is a family history of someone dying suddenly at a young age and for someone within your family living with a heart condition. There is a lot more detail on this on our website http://www.cry.ie/index.php/need-help/information.

Many people associate SADS with sports and it is a misconception that sport can cause this condition. People who die from SADS already have a heart condition which, in the majority of cases, they do not know about. Sport generally increases the work that the heart has to do, so can increase the incidents of sudden death during a period of intense activity.

If you feel you need to be screened because there is a family history or you suffer from any of the symptoms above, contact your GP and if they feel it is necessary they can refer you on to the CRYP Screening Centre. Please note the majority of families that the centre sees have a family history of SADS. For further information check out our website at http://www.cry.ie/index.php/need-help/information. I hope this has been helpful in giving you a better understanding of what SADS is.

Orla Durkan – Fundraising Manager

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website.

CRY – How we started

CRY SADS Screening Centre

CRYP Screening Centre at Tallaght Hospital

As part of my role in CRY I am out and about at fundraisers, meetings etc. representing the charity.

I am constantly being asked-how did the charity come about, who started it? Hence, I thought this would be a good place to start for my first ever blog for CRY!

For me to tell the story would not do it any justice – the best way to hear the story would be to watch the video that we feature on our website

Marie Greene recounts how her youngest son Peter died suddenly at the age of 15. As a result of Peter’s death, Michael and Marie Greene soon came to realise that there was very little support for families that have lost a young person to sudden adult death syndrome in Ireland.

There was no one to talk to about the grief they were experiencing. Yes, there was grief counselling services out there, but none that specialised in losing someone so young, so suddenly, to a heart condition they didn’t even realise they had.

There was also the issue of getting the rest of the family screened – they had been told at the time that there could be an instance where other members of the family may have a similar condition.

In order to get everyone screened they would have to do this privately and it would be very expensive. As they looked into the SADS condition they soon came to realise that there was very little information out there in the public realm.

Hence, they decided to start the charity Cardiac Risk in the Young to help other families so they could receive the support that the Greene family did not get when their son Peter died.

CRY originally started out by raising awareness for Sudden Adult Death Syndrome as well as providing a free counselling service to families and friends who had lost a young person to sudden cardiac death.

The team from the charity set up a network of Volunteers, who themselves had lost someone to SADS so at least those requiring support were assured that they were talking to someone who understood what they were going through.

Five years after the charity was started CRY managed to raise enough money to establish a specialised screening centre based out in Tallaght Hospital.

This screening centre now sees between 1500-2000 patients yearly – from families all over Ireland. CRY fundraises to ensure this is a free service for families so they do not have to go to the expense of getting this done privately and ability to pay is never an obstacle to getting access to essential services.

The centre has now developed into one of the most comprehensive screening services in Ireland that is cardiologist lead.

Because of Michael and Marie’s efforts, they have ensured that families going through what they experienced now have a lot more structure and support to help them through what is probably the toughest experience of their lives.

Michael Greene is the Chairman of our charity and Marie is head of counselling and family support.

I see the incredible work that they do and they both work tirelessly as volunteers.

I am proud to work as the Fundraising Manager for this incredible charity and am privileged to see the huge difference that is being made to so many lives on an ongoing basis.

Orla Durkan – Fundraising Manager

If you would like to learn about CRY, find out more about our services or participate in a fundraising activity please contact me or check our website