"Sleep tight angel, and don't forget to give Saoirse a big hug"

Tony Heffernan carries the remains of his son Liam to his final resting place. Picture: Don MacMonagle

There were emotional scenes in Co Kerry today as little Liam Heffernan, the five-year-old boy who died at the weekend from Batten's Disease, was laid to rest.

Liam finally lost his lifelong struggle against Battens, a very rare neuro degenerative brain disorder that also claimed the life of his sister Saoirse (5) in 2011, on Sunday morning.

He passed away in the arms of his parents, Tony and Mary Heffernan, who were marking their wedding anniversary on the day.

Liam was buried today beside Saoirse in Keel, Castlemaine. His father was among those who bore his white coffin, his mother close behind with Liam's blankie clutched to her breast.

Mary said it had been a privilege for her and Tony to be Liam's parents.

Tears flowed in St Gobnait's church as Fr Kevin McNamara told those who gathered to celebrate Liam's short life that he had been an "angelic and saintly little person".

Fr McNamara also said that the work of his parents in establishing the Bee for Battens organisation to raise awarness of the disease had "pricked our conscience".

"It's not just charity to look after the sick, it's Christian obligation," Fr McNamara said.

Three of Liam's nurses brought to the altar a dinosaur, jigsaw, football, books and a National Children of Courage award - symbols of Liam's short but rich life.

Prior to the ceremony Liam's father Tony paid tribute to his son on Twitter.

Speaking from the altar, Liam's mother Mary Heffernan said it was a privilege to be have been parents to him and Saoirse.

"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," Mary said.

"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."

She was warmly applauded after concluding:’’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.’’

Liam had suffered a sharp deterioration in his condition towards the end of April, and he and his parents were brought from Kerry General Hospital to their home in Keel on April 30.

Liam's final journey home was in the BUMBLEance, a specially-adapted vehicle owned and operated by their charity, The Saoirse Foundation.

The BUMBLEance is used to transport sick children across Ireland to and from hospitals, respite centres, national treatments centres and family homes.

The charity is also pursuing the development of Ireland's first respite centre for families of children with rare diseases.

This facility, which will called '[url=http://www.beeforbattens.org/blog.php?c_id=13]Liam's Lodge[/url'] is to be located in Tralee.


More about Battens Disease and the charity work of the Heffernan family:

- Bee for Battens

- The Saoirse Foundation

- BUMBLEance.com

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