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The parents of a brave boy who lost his battle with the same disease which killed his sister have described their agony at having to bury both of their children.

Liam Heffernan, from Keel in Kerry, died at home in his parents’ arms on Sunday after courageously fighting Battens Disease.

The deadly genetic condition has now cruelly left Tony and Mary Heffernan childless after Liam’s older sister Saoirse died in 2010. Both were aged five.

The heartbreaking loss came on their wedding anniversary.

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.”

In a message posted on both Twitter and the Bee For Battens charity Facebook page, dad Tony said: “Little Liamo has grown his angelwings & joined his sister Saoirse in heaven.”

“RIP son. Superhero. No more BattenDisease.”

The statement issued on the family’s behalf also added: “The family would like to thanks the doctors, nurses and carers who helped Liam and his parents over recent weeks.

“Liam’s story and that of his sister Saoirse have captured the hearts of the nation and beyond over the 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 so short a period after the

procedure.

“The Heffernans will forever campaign to raise awareness of Battens disease, support families and fund treatment trials and research into this cruel fatal disorder which has taken their entire family.”

In recent interviews Tony spoke of the pain of watching his dinosaur-mad child dying, describing it as a “ticking time bomb”.

Just a week ago he was preparing for the worst when he posted a photo of his son in hospital on Twitter, saying the youngster was “very very poorly”.

Tony had become vocal in his fight against Battens, a degenerative disorder that generally attacks vision and impairs mental and physical growth.

He started the Saoirse Foundation, named after his daughter, with his wife Mary, after it claimed his little girl’s life.

The couple is also involved with the campaign Bee for Battens, which raises awareness of the disease with the public.

They had devoted the past few years to trying to find effective treatment for their son and to giving him as comfortable a life as possible in the time he had left.

Following the gruelling surgery in New York three years ago, although initial signs were positive, the following year doctors at Great Ormond Street in London told the couple Liam had not produced the required protein in his brain he needed to survive.

His condition deteriorated further last year, as he lost his sight, most of his mobility and speech as well as suffering an increase in seizures. The brave youngster had to be tube-fed and required 24-hour care because of the killer seizures, which he suffered several times a night.

Last November, the couple predicted Christmas 2013 would be their last with Liam. He was due to turn six in July. At the time his parents said: “He did so well and he did improve slightly after the surgery in New York but the best we could have hoped for was that Liam could’ve got a slightly extended life.

“And while he got that to some extent, we just wished it could have been longer.”

Liam will be waked at the family home before being laid to rest beside his sister.

As both Tony and Mary face the heartrending ordeal, hundreds of tributes and messages of support inundated the charity’s sites and on Twitter.

Jack Murray wrote: “I’m so terribly sad for my friends the Heffernans on the death of their son Liam from Battens disease #LittleLiamo . Life is so cruel.”

Another woman added: “Your little angel Saoirse will mind him for ye now and help you get through this devastating time.”

The couple now hopes to raise €4.5million by 2015 to build Liam’s Lodge, which would be Ireland’s first national hospice and respite centre just for children. To help visit www.liamslodge.com or beeforbattens.org.

To help visit www.liamslodge.com or www.bumbleance.com.