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Monday 18 December 2017

Superhero son Liam taught us to cherish life, says mum

Liam’s mum Mary places a hand on his coffin
Liam’s mum Mary places a hand on his coffin
Liam's coffin is carried from his home by dad Tony
Liam’s parents hug in church beside his coffin
Liam Heffernan
Majella O'Sullivan

Majella O'Sullivan

HE HAD lost his sight, his ability to walk, talk and swallow.

But little Liam Heffernan still managed to smile, laugh and clap his hands.

His heartbroken mother Mary said although Batten's Disease took everything, it never broke her boy's spirit and the family were going to "live life to the full" to honour their children.

Liam (5) died in his parents' arms at the family home in Keel, Co Kerry, on Sunday morning, finally losing his battle with the extremely rare and degenerative brain disorder that also claimed the life of his older sister Saoirse (5) in January 2011.

Mary said her "superhero little Liamo" had taught them how precious life was. "The most common question Tony and I get asked is, 'how do ye keep going?' and the answer is simple, life is worth living," she told mourners at his funeral Mass in St Gobnait' s Church.

"Liam smiled, he laughed, he clapped and taught 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 day is so important as he fought tooth and nail for it."


The little white coffin was carried the short distance from the Heffernans' home to the church by his father Tony, alongside Liam's uncles.

Symbols brought to the altar to represent his short life included a dinosaur, a Peppa Pig jigsaw, books, a football, and his National Children of Courage Award received in November 2011 by the Share A Dream Foundation.

Mary said when Saoirse's life ended in January 2011, it was "our Liamo" who had kept them going.

Liam had undergone brain surgery at the Weill Cornell University in New York in May 2011, and for the following six months he began to thrive.

"We dared to believe the treatment had worked, and that we had cured our boy – but it wasn't to be," she said.

She recalled an incident on their plane journey where Liam mentioned the big sister he had lost.

"Liam turned to us and said, 'look, Saoirse's house, we see Saoirse?'," she recalled.

"He was pointing out at the blue sky, the very place we told him Saoirse was . . . it broke us."

Liam and Saoirse Heffernan before Batten's Disease took hold.

Fr Kevin McNamara, who concelebrated Mass along with Keel parish priest Fr Luke Roche, said he was grateful to the Heffernans because they had "pricked the conscience of society".

Among the mourners was Miriam O'Callaghan, who is patron of 'Liam's Lodge', the first national respite centre for children with rare diseases that the Heffernans plan to build.

Irish Independent

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