'It was a privilege to be your parents'
These are the words of Mary Heffernan, delivered at the funeral of her son Liam last week
'We are here today to celebrate the life of our superhero little Liamo. Liam was born on the 3rd of July 2008. He came into this world six weeks early, that was our boy, always in a hurry.
Doctors told us he would be in hospital for weeks and weeks but 19 days later he was home ruling the roost. One of our happiest memories is that very day when we brought him home. His big sister Saoirse was so excited we thought she would burst, she hugged and kissed and cuddled him so much.
"I told her to be gentle as he was only a small baby, she looked up at me with her big blue eyes and said 'mommy, he's mine'. And so a bond was formed.
"Together they would play endlessly, Saoirse bossing Liam around and Liam happy to be bossed. Life back then was normal, for those precious few months before Battens came into our lives.
"When Saoirse went to heaven in January 2011 our world crashed down around us but it was our Liamo, our little man that kept us going. He missed his big sister so much, he would go around the house looking for her, calling her name.
"How do you explain to a two-year-old about death, we came up with a story to help him understand, we told him she lived up in the sky and she had a magic wand so if he ever needed anything all he had to do was look up at the sky and ask Saoirse and she would be there for him.
"A few months later we were New York bound for Liam's brain surgery.
"Mid flight and out of nowhere Liam turned to us and said 'Look Saoirse's house, we see Saoirse?' He was pointing out at the blue sky, the very place we told him she was, it broke us.
"On the 3rd of May 2011 Liam had his surgery, it took eight hours and when it was done the surgeon came and spoke to us. He told us to prepare ourselves as Liam would be in intensive care and wouldn't even know us for the first 24 hours. Again our boy had other ideas, 45 minutes later he was sitting up drinking juice watching a DVD. 24 hours later he was out and about running up 1st Avenue chasing pigeons.
"For six months after his surgery Liam thrived, we dared to believe that the treatment had worked, we had cured our boy. But it wasn't to be, Battens rose its ugly head again and got its clutches into Liam.
"Bit by bit it took him, his sight, his ability to walk, his ability to talk and everything else in between, but it never took his spirit.
"His courage astonished us. While we his parents struggled to come to terms with what was happening to him in front of our eyes, helpless to do anything about it Liam smiled, he laughed, he clapped and thought us to cherish life no matter what it throws at you. Liam's life was short, five years 10 months and one day and that one day is so important as he fought tooth and nail for it.
"The most common question Tony and I get asked is 'how do ye do it lads, how do ye keep going' and the answer is simple – life is worth living.
"After watching our two beautiful children struggle to hang on to every second of their short lives it is our duty to live life to the full in their honour.
"So Liam son, as we part we want you to know that it has been an absolute privilege being your parents.
"You are and always will be the light in our lives.
"We love you beyond words and will miss you even more. Sleep tight angel and don't forget to give Saoirse a big hug from us."