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Tuesday 30 September 2014

Parents unbearable grief after their second child dies of Battens disease

Little Liam Heffernan lost his battle against Battens disease this morning

Published 04/05/2014 | 08:19

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Liam Heffernan (right), with Miriam O’Callaghan (left) and his mum Mary.
Liam met with Miriam O'Callaghan as part of the Heffernans plans for a respite care centre, focusing on children with rare genetic disorders
Liam met with Miriam O'Callaghan as part of the Heffernans' plans for a respite care centre, focusing on children with rare genetic disorders

A FAMILY were in mourning today after their son (5) died from the same rare disease that claimed the life of his sister three years ago.

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Little Liam Heffernan lost his fight with Battens disease this morning and died in the arms of his parents Tony and Mary.

His father Tony Heffernan tweeted that his son had “grown angel wings” and “joined his sister in heaven”.

It is the second tragedy to befall the family after their daughter Saoirse died from the same disease in 2011.

Liam’s parents have spoken of their anguish of losing their son. In a statement they said, "We now face our biggest fear, which wasn’t just picking up the white coffin casket of our son Liam, but lowering Liam into his grave, alongside his sister Saoirse. We now face this in the coming days."

Tony and Mary Heffernan from Keel, co Kerry - were told last year that they would most likely lose their son in 2014.

In his last year, Liam went blind, lost nearly all mobility and was not able to consume solid foods.

 

LiamNew.jpg 

The picture that Tony Heffernan posted of his son this morning

 

The statement from the Heffernan family read: "Liam, who enjoyed life and was known across the world for his passion for dinosaurs and books, had a rapid deterioration in his condition and finally lost his battle against Battens Disease, an ultra-rare neuro degenerative brain disorder.

"Liam will be waked at the family home before being buried alongside his big sister Saoirse at the local Keel Cemetery. 

"The family would like to thanks the doctors, nurses and carers who helped Liam and his parents over recent weeks.

"Saoirse, who at the tender age of five lost her life on January 18 2011, also had the fatal condition, late infantile Batten Disease.    

"Liam’s story and that of his sister Saoirse have captured the hearts of the nation and beyond over that past four years and their relentless positive campaign for sick children has been covered numerously across every TV network, newspaper and radio station in the country.

"After Saoirse's death, the couple fought to save their only remaining child’s life and travelled to New York, when on the May 3 2011, Liam underwent an eight hour brain surgery as part of a medical treatment trial at Weill Cornell New York Hospital.

"This medical trial provided the family the only hope of extending Liam's life and the family are grateful to all of those who helped extend and improve Liam's life a short period after the procedure."

Tony and Mary Heffernan are vocal campaigners for Battens disease awareness, which is one of the rarest conditions in the world.

Tributes were pouring in for the youngster all day on Twitter with #Littleliamo trending.

 “I'm so terribly sad for my friends the Heffernan on the death of their son Liam from Batten's disease #LittleLiamo . Life is so cruel,” wrote friend Jack Murray.

The couple run the Saoirse Foundation, supporting other Irish families in similar positions.

The Heffernans are looking to raise €4.5million to build Liam’s Lodge, which would be Ireland’s first national children's hospice by next year.

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 mobile phones  free of charge to: The Bee For Battens Appeal, Freepost, PO BOX 7958, Dublin 11.

More details available on http://www.beeforbattens.org

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