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Sinead Ryan: Courage and dignity of Saoirse's parents will give hope to others

Saoirse Heffernan's untimely death from rare Battens Disease has devastated her parents, but their quiet dignity, their bravery and never-ending hope throughout her illness have left them with qualities that most of us will never acquire.

As they say goodbye to their daughter, only five years old, who turned out to be the bravest person they would ever know, the Heffernans will realise -- maybe not just yet -- that not only were their lives changed irrevocably by her arrival, but that Saoirse's short time on Earth has shown us all the very best example of what it means to be a parent.


They are loving, undoubtedly. They are also persistent, tenacious, caring and resolute. You cannot live through a terminally ill child's traumatic life without acquiring all those virtues. They will stand them in good stead, for Saoirse leaves behind a baby brother, Liam, who is also battling the same disease.

In addition to their new-found skills, they have also found the time, and presence of mind -- when goodness knows if the rest of us would even be able to think clearly -- to raise funds for others facing into the same heart-breaking treadmill.

Can you imagine what it took for the Heffernans to turn up at events, asking people to contribute and join in while all the time Saoirse herself had little hope of life. No, this was done for other people's children: surely the most unselfish of motives.

And the money is making a difference. Experimental work with stem cell surgery is helping some children in the United States -- and the Heffernans travelled there with Saoirse in October.

Sadly, she was no longer suitable for medical treatment but her little brother Liam has been accepted into the programme, which he can put down entirely to his sister.


She died. He might be helped. In truth, if the Heffernan's hadn't had Saoirse's experience to draw on, they would be starting from scratch with Liam, dealing with the shock diagnosis; assimilating masses of information; finding others like him; reaching out, desperately for a chink of light.

Thanks to brave little Saoirse, some of that groundwork is complete. Liam is starting out his battle with a ready-made army: a regiment of fighters, a battalion of support and a little more in the war chest of funds to commence the conflict.

For Tony, it's a brand new nightmare starting all over again which he's sharing with his wife Mary. There is no let-up.

"I'm getting good support and good information. They're telling me what to expect, it's hard but invaluable, and at least you can trust it. You don't get much sleep, you'd be fairly tired, and it's taking a lot of time to mind Saoirse. We want her to stay with us. She's our little girl and we don't want her to go," he said with immense love and clarity recently.

For most parents who bring a child into the world, all they can see ahead of them are the parties, the football matches, the first school uniform.


The tooth fairy, Santa Claus and new dresses. The friends, the teachers and ultimately, their own children.

It's a natural order -- a cycle. Nobody ever wants to be part of the elite, select group that the Heffernans have found themselves in for five years.

Think of them today. And count yourself, whatever your minor worries, very lucky.

To help continue support for the Heffernans and learn more www.beeforbattens.org