How the CRYP Centre Helped Me by Fintan O’Mahony

Love___Heart_of_hearts_042863_It’s been a busy few months. I’m getting two weeks off from Wednesday, which is welcome I suppose. Where this all began is with an appointment at the CRYP centre in Tallaght hospital to get my three girls, and me, checked for any irregularities in our hearts. We were monitored, scanned, I ran farther on a treadmill than,  it is safe to say, I have run in quite sometime and were sent home with Holter monitors to wear over night.

Actually, it didn’t begin with that at all. It began in the summer of 2006 when, while on holiday in Killarney with my wife and then only one daughter we got a phone call nobody would wish on his worst enemy: my brother had been found dead in his apartment in Dublin. Conor had been treated for a heart problem for years before and now at 32 he was gone, it’s defined our family since.

So when the doctor called to say my Holter monitor showed a pause of five and a half seconds around five am (in other words my heart stopped) I was pretty calm. The kids were all fine and I knew Conor had had pauses of up to eight seconds so I didn’t panic. Then I asked the doctor what we should do about it and she said she’d like me to get a pacemaker.

A pacemaker is a small, battery-operated device into your chest, to help your heart beat regularly, you know that. The surgery is minor, I only get a local anesthetic and I’ll be awake while it’s done. It’s preventative, it’s to make sure I motor on, but it’s my heart and that’s crucial to understanding the nerves that go with this operation.

When I was a kid I was a pretty good athlete, a sprinter and middle distance runner for most of my teens, I think it’s safe to say that girls and school got in the way and I drifted away from it. I still feel my heart beating as I won my first All-Ireland medal, it was fine and regular when I came off the bend in a 200 metre sprint, but when I saw the line and no-one ahead of me, there was a quickening, when I saw my brothers and parents that’s when it almost burst out of my chest. Or when I saw my wife in Holycross Abbey on our wedding day, or when each of my three children was born, that’s when I remember my heartbeat. So the way I think of having a pacemaker fitted isn’t as the end of something, just a little bionic kick to make sure I can have more of those moments, though I’m not planning on running 200 metres, or getting married again (or having any more kids!).

At CRY they have a big family tree for us, on a huge spreadsheet. I imagine there’s a code for checked and clear, one for checked and operated on, one for the next world. A death in the family isn’t easy, a young death is a shadow hanging over you for ever. That’s what CRY is for, making sure the shadow doesn’t spread. My Dad has raised huge money for them over the years, they exist on donations which is criminal when there is such a need for the service they provide.

So. That’s it. I’m not allowed to drive, but I can, write and tweet. If you’re thinking of helping a charity cry.ie is a good choice.

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

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My Rio World Cup Journey by Michael Griffin

Rose of Tralee Football _CB (2)

I travelled to Rio to experience the atmosphere of the World Cup and brought my Na Gaeil GAA jersey with me with the intention of getting a few autographs (maybe two or three) and if I got more I would sell/auction it to charity. Luckily it quickly became five, six etc. and when I managed to get Diego Maradona, the most talked about World Cup legend ever, it really gave me motivation and confidence to get more. When it became known at home through the media what was happening it really took off and I put myself under pressure to achieve more for the selected charity. The selected charity being CRY –Cardiac Risk in the Young. I choose CRY for a few reasons. I wanted a young people’s charity, I wanted a small charity that would really benefit from the funds and because cardiac risk is so prominent in sport, CRY stood out to be a perfect fit. The following piece is a short insight on how I made the impossible possible.

Here is the list of 24 players that signed the jersey. This list is composed of 5 World Cup winners including 2 captains and 4 Champions League winners.

Leighton Baines, Leroy Fer, Michael Vorm, Tim Krul, Klaas Jan Huntelaar, Danny Murphy, Robbie Savage, Ruud Van Nistelrooy, Roberto Martinez, Santiago Solari, Ian Wright, Diego Maradona, Gary Lineker, Martin O Neill, Patrick Vieria, Fabio Cannavaro, Gordan Strachan, Phil Neville, David Trezeguet, Alan Shearer, Christan Vieri, Jamie Carragher, Mesult Ozil, Zico

All players were very obliging and willing to sign and take a selfie. Security with most former players was not an issue. For example in relation to Diego Maradona a number of security guys were helping me find a way in without getting themselves in trouble. The first autograph I got on the jersey was English player Leighton Baines. The hotel was closely guarded but I decided to walk in anyway and when I entered I saw Baines and quickly took advantage, he obliged signed and posed for a photo. I was then escorted from the hotel.

The following day I made my way to Ipanema beach and luckily came across the Netherlands team hotel, the team were leaving the hotel to make they’re way to the training ground and I wriggled my way through to get a few more autographs from the likes of Leroy Fer, Michael Vorm, Tim Krul the star penalty stopper and Klaas Jan Huntelaar the former Real Madrid striker.

I realised early on that I had a knack of figuring out where players could be, what time of the day, where they are staying and I had confidence in myself that I would find more. Danny Murphy the former Liverpool star was the first to help me in a way after I asked him and explained the jersey and charity idea. He gave me hints as to where some players were at certain times and near the end he was probably sick of me because I was bumping into him so often which was all by chance.

One day stood out more than others. I managed to come across Danny Murphy and Robbie Savage doing media work on the beach and after having some craic and recording an interview with them I made my way towards the hotels and bumped into Manchester United legend Ruud Van Nistelrooy. Van Nistelrooy was so obliging and after explaining the charity idea he called two more friends in for a selfie including current Everton boss Roberto Martinez and former Real Madrid star Santiago Solari. I met Marcelo (my Brazilian host) for lunch and he mentioned that he read Maradona was in town. I said what an autograph that would be, so, with some help from a friend of Marcelo’s we took a road trip with a 5% chance of meeting Maradona, it was enough for me. Kerrymen are known for being cute so I used this cuteness to charm my way to meeting one of the greatest player ever, certainly the most talked about ever Diego Maradona.
Even-though it sounds like work, I loved every minute of the rush and meeting the players. The BBC and ITV had studios at the end of Copacabana beach. The first group matches of the day started at 1pm and at 12pm. One afternoon I decided to sit outside the media centre to see what happens. Within minutes I met Gary Lineker, Patrick Vieria, Martin O Neill and Gordan Strachan and later Phil Neville, David Trezeguet and Christan Vieri. During my travels I visited Flamengo football club and happened to bump into Jamie Carragher the former Liverpool icon who was very polite.

Social media also became my friend, especially twitter. Fabio Cannavaro the Italian World Cup winning captain is a regular tweeter. He tweeted a photo of himself on the beach wearing a tweed hat, similar to a tweed hat I later bought myself and I recognised the background. I was having lunch at the time and quickly paid my bill and ran to where he was. He again was very kind and was impressed with the idea and the jersey.

There is a very well-known hotel in Rio called Fasano. I was sitting at the bar drinking a coke, yes a coke, and nibbling on some nuts when in walked Cannavaro whom I already had met along with Danny Murphy and Alan Shearer. Murphy commented “are you still here” and Shearer took time to sign the jersey and pose for a photo.

I was lucky enough to have the honour of attending a World Cup Final. The atmosphere was one highlight but another was getting so close to the winning team Germany after the match that I could smell the hard work. One man was particularly memorable and that was Arsenal star Mesult Ozil. He signed the shirt and doodled on my neck in the process, the media had a field day and I ended up live on Argentine television I was later informed.

The jersey and trip was a huge success but I was missing one thing…a Brazilian autograph.. Zico was without doubt the most talked about legend aka Brazilian footballer in Rio, mainly because he was the most successful Flamengo fc player. Flamengo being the most popular club in Rio. I received information that Zico had a football academy not too far from Rio therefore I decide to act on it  After gracefully avoiding security I met a man who directed me to the president of the clubs office. I explained my situation and he hit me with some bad news. Zico was in Sao Paulo and was travelling to Japan in the morning. I was very disappointed but…this “but” is positive for a change. Bruno the president said he might be meeting him in between flights and hopefully he can help. It was my final day in Brazil and I decided to contact Bruno which was planned. Marcelo aided me and rang Bruno Coimbra, recognising the name he realised it was Zico’s son. Bruno was very kind and sent on images of Zico signing the jersey. I was ecstatic. I achieved what people and I would have thought was the impossible over an unbelievable six week period. What an experience.

The Jersey will be auctioned for CRY this Friday 22nd August on ebay-

Mike Griffin’s Jersey Auction for CRY

To view Michael’s video of his world Cup experience check out his video.

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.

 

 

 

SADS & Sports – Is there a link between the two?

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There is a common misconception that by playing sport, particularly at a very high level, this can lead to Sudden Cardiac Arrest. It is not surprising as in the last ten years we have seen some very high profile sports people who have been affected by Sudden Cardiac Arrest. Within the GAA community, Cormac MacAnallen’s death had a profound affect on a lot of people. Cormac was only 24, in the prime of his fitness and the captain of the Tyrone team. He died suddenly in his sleep on 2nd March 2004 (thecormactrust.com). More recently the young Dublin football under 21’s player Ciaran Carr collapsed while training on the pitch on 20th January 2012 and sadly died (ciarancarrfoundation.ie). Both players would have had an underlying heart condition that they were not aware of. By playing sport, this accelerated the condition (as you are putting extra strain on the heart), however, it did not cause them to collapse.

People who have heart conditions carry a slightly higher risk of sudden death during periods of fairly intensive activity than at other times. This is why as a precaution, if someone is diagnosed with a cardiac disorder they will often be advised to avoid competitive sport or endurance training as this can bring on heart failure.

Thankfully if the right equipment is nearby you can survive a Sudden Cardiac Arrest.  The Bolton player Fabrice Muamba collapsed on the pitch while playing against Spurs in White Hart Lane on 17th March 2012. Muamba’s heart stopped for an alarming 78 minutes and thanks to a defibrillator and the medical team nearby he survived. He has now made a full recovery. However, because of his heart condition he has had to retire from the game. Just recently CRY were delighted when the Dublin minor hurler Cormac Ryan undertook a cycle around Ireland for three charities including ours. Cormac was lucky that he discovered that he had a heart condition before anything serious happened. He is an amazing young man and is a great example of how to live well with a heart condition.

The Dublin senior football player Michael Darragh Macauley was recently screened  at the CRYP Centre in Tallaght Hospital. Thankfully he received a clean bill of health and according to Dr. Ward, he has a beautiful heart – some of the ladies may agree with this! Check out the segment below from Ireland AM.

http://www.tv3.ie/3player/show/184/0/0/Ireland-AM

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.

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.

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.