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The Heffernan family, Tony, Liam, Saoirse and Mary. Photo by: Heffernan Family

Parents who lost two children to rare disease will live life to the full (VIDEO)

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The Heffernan family, Tony, Liam, Saoirse and Mary. Photo by: Heffernan Family

Scenes of emotion and immense strength were seen at the funeral of five-year-old Liam Heffernan in County Kerry on Tuesday. The young boy lost his battle with the rare genetic condition, Batten disease, which also claimed the life of his sister, Saoirse (5), in 2011.

Liam passed away on Sunday in the arms of his parents, Tony and Mary. It was also the date of the wedding anniversary.

Their young son was buried next to his big sister, Saoirse, in Keel, Castlemaine.

His father Tony was one of the pallbearers. His wife, Mary, walked closely behind, Liam’s white blanket held to her chest. She said it had been a privilege for them to be Liam’s parents.

Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Liam had undergone brain surgery at the Weill Cornell University in New York in May 2011. However, last year he lost his sight and in the past two months began having frequent seizures and could not eat.

Speaking at the funeral mass, at St Gobnait's church, Father Kevin McNamara described Liam as an angelic and saintly little person.”

Mary told the congregation, “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 honor…

"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."

Her words were greeted by warm applause from the congregation.

“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.”

She concluded, “You [Liam] are and always will be the light of 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.’’

A friend of the family, Fr McNamara commended Mary and Tony’s ongoing charity work. The couple established Bee for Battens to raise awareness and raise funds to care for the children suffering from the disease and help their families.

“There’s a tendency in the world today to let others take responsibility, but thanks to Tony and Mary for what they have done by celebrating the lives of their two extraordinary children.

"They touched people’s hearts the way they went through it,” Fr McNamara said.

“But, bringing Battens more to the fore should not be dependent on charity and there’s a need for a change of heart among those who govern. There’s too much dependence on charity for so many illnesses.”

He also said, “Jesus said the Kingdom of Heaven belongs to children and I hope they're wrecking a little bit of heaven today as they were limited here in what they could do, but I hope they really let fly today. But I know they will never forget their mum and dad, their granny and granddad and all the family who were special to them. May they rest in peace.”

Donations can be made to: The Saoirse Foundation, Address: AIB Tralee Co Kerry Account No: 85130187; Sort Code: 93-62-19; IE13AIBK93621985130187; Swift Code: AIBKIE2D

Postal Donations can be made Bee For Battens, The Saoirse Foundation, Castldrum, Castlemaine, Co Kerry, Ireland.

You can also donate be sending old cell phones free of charge to: The Bee For Battens Appeal, Freepost, PO BOX 7958, Dublin 11.

More details available on www.beeforbattens.org.

Here’s a moving promotional clip made for Bee for Battens:

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