Thursday, 7 March 2013

Life After Sudden Adult Death Syndrome

It was a normal day in the world of GAA, Erin’s Isle of Finglas against O Dwyer’s of Balbriggan. The game was close and the regular spectators were sprinkled around the edges of the lined pitch on the grounds of Erin’s Isle. For a moment, no-body but the goalkeeper noticed when an Isle’s player, Francis Leonard, clutched at his ankle and then his chest before toppling over onto the grass.

Francis Leonard was 29 years old, a recent graduate and homeowner when he died of Sudden Adult Death Syndrome, 18th November 2006.  But this is not a story about the life of Francis Leonard, a person called before anyone was ready. This is a story of life after Francis and how his father, Greg Leonard, managed to continue on after the devastating loss of his youngest ‘baby’.

Greg is now a key member in offering consolation to those family and friends affected by Sudden Adult Death Syndrome, a sometimes genetic syndrome that simply cause the heart to stop beating. Greg was contacted by the founder of the organisation C.R.Y shortly after Francis passed.

“About a week after Francis died, he died November 18th, we got a letter from Marie and she explained to us who she was and what she did with C.R.Y,” says Greg.

Marie Green and her husband found the organisation C.R.Y (Cardiac Risk in the Young) when their own son died of the syndrome in 1996. Since then C.R.Y has been used to raise awareness about the syndrome that is being explained for more and more unexpected deaths (2 per week) and raising funds to help the charity reach out to those in need.

C.R.Y helped Greg and his own family and it gave them the relief to know ‘they were not alone.’ For Greg being able to find out more about what had claimed his sons’ life was soothing in itself and immediately immersed himself in learning more and dealing with his own grief.

‘”Marie,” Greg says, fondness and gratitude evident in his voice, “is the best person you could ever meet when bereaved.”

And now, people may be echoing the same words about Greg, who now works hard to raise the awareness of Sudden Adult Death Syndrome and fundraise. He also reaches out to those who have been recently bereaved as Marie once reached out to him and though he does not counsel them, he lets people know they do not need to be alone, that there are people who understand and are willing to talk.

On 26 of January 2007, Greg and his wife Elsa pulled in beside the road on a return trip from Liffey Valley Shopping Centre and talked about their loss and their survival on the Joe Duffy Liveline Radio show.

“I told the kids,” smiled Greg, “and they said ‘Da, I hope you didn’t sing the Happy Song. And of course I had.”

‘The Happy Song’, Greg explains, was a song Fran used to sing whenever he was sad or feeling a little stressed. It echoes the loving, caring nature that was Fran which is obvious he inherited from his father as he begins to sing the rendition. It is easy to see the strength in the father’s character and how he knows when he sings the song, he feels his son with him.

The Leonards also appeared on TV3 and RTE to raise awareness and encourage young athletes and those participating regularly in contact sports to get screened. The Leonard family happened to be the first family to become screened after Fran’s death.

“The screening hadn’t even opened; they were working out of Tallaght Hospital at nighttime after hours. We were there at half four and didn’t get out till half nine.”

Since the Leonards were screened, a special clinic has been opened up in Tallaght Hospital and Greg has actively participated in encouraging people to go.

“We got great support from everybody, especially the GAA, the county board,” says Greg. “On my request the County Board put a form on the back of the match programmes. They put it for nothing.”

The small easy to fill out form appeared on the programme of one of the biggest Dublin matches of the year, seeing Croke Park fill 70,000 seats. How many people noticed the form, filled it out and perhaps got shocking news that saved their lives, who can tell? But for Greg, knowing that someone out there was most likely saved from the same faith as Francis through his own actions it is a good feeling to live with.

Greg appears both sad and happy when he mentions a fact that has probably comforted and tortured him on several occasions over the last five years.

“I was the last person to see Francis alive in the family,” he states matter of factly. “It was a Thursday night and he’d missed training. We [Elsa and Greg] were going to London the next day for my brother’s surprise birthday party, his 70th birthday. We were flying back on the Sunday and everyone was going to be here. We were going to get an Indian Takeaway. I’d made out my list; Francis had other ideas to amend the order.”

Again the strength of Greg’s character shines through as Francis is remember and lives on through conversation. His death is not hidden but merely a statement. Sadness is hidden behind the Leonard’s obvious pride and devotion to their son. Love and tenderness is shown in the precious Indian Takeaway menu that lies on the table, Francis’s post-it with his menu preferences still stuck on. It is something that will never be shared with strangers; it’s a small token of remembrance and comfort for the Leonard family.

Greg is known in GAA circles around Dublin, something that has greatly helped with funding and raising awareness for C.R.Y. The GAA always there to help, matches are held every year between Isle’s and O’Dwyers in memory of the tragic unfinished game of November 18th.

Francis Lawlor, former Juvenile Chairman of Erin’s Isle G.A.A, greatly admires Greg for not only his work but for his faith and his devotion that has never been extinguished.

“The only thing I could say about Greg,” says Fran “is that he’s a real hero. Not in what he’s done for C.R.Y but for how he’s turned something that’s tragic into something that’s good and something to be happy about.”

The same can be said for Elsa Leonard, who when asked previously where Fran is replied cheerily, “Oh, my Fran’s in heaven!”

Religion is a strong factor in the family and it certainly helped when dealing with Fran’s death. Masses have been set up by Elsa and Greg for families grieving a sudden death whether it is from a car accident to suicide.  And on the day of Fran’s funeral, a letter was read out composed by his family. It was thought to be the words of Francis, speaking to his friends and family as they grieved for him.

“I’m sorry for giving you all a fright last Saturday but when I was called, I had no choice...thank you for trying to rescue me.”

The letter again speaks of the nature of Greg and his family. At a time when they were grieving, they all found a way to bring comfort to each other and everyone who knew their son, brother and partner in something as small, as giving Francis a voice when he could no longer be heard by everyone.

Greg goes out of his way to help families like his on a regular basis. He tries to encourage all families, especially those with young members to be screened for the Brugada Syndrome, a genetic syndrome Francis and those of his family had. It’s a syndrome that causes the electrical charges in your brain that control the beat of your heart stops, resulting in your heart failing to beat. The victim has 12 seconds until they die a timeframe that more often than not proves fatal. Greg has raised awareness of this particular syndrome through C.R.Y, to allow those with the gene to take care in their life and avoid activities that could trigger it and therefore save their lives. Fundraisers have been set up, some concerts led by Mary Black, the Irish singer.

Through the light-heartedness of Greg’s personality and the easy way Francis is mentioned in conversation, a listener can almost forget the devastating and tragic loss the older man has suffered. But then when asked how he feels about his activities in C.R.Y and helping others, Greg allows a moment of sadness and shadow cross his face as his eyes drift to the pictures of all his sons on the wall.

“It’s therapy for me,” he replies distantly, “that’s all I can really say; it’s just gives me something to do. I can still feel the last hug he gave me.”

Even with all the busy, hard word, the loss will never be truly be forgotten but Greg’s work will continue on in the hopes of worldwide awareness and screening so less families have to go through the trauma of losing one so young, so suddenly.

The time to be happy is now
And the place to be happy
Is here
And the way to be happy is
To make others happy
And to have a little heaven
Down here.
{In memory of Francis Leonard}

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