Monday 18 December 2017

Liam's hopes in US surgeons' hands

Boy with rare disease flies out for surgery

Liam Heffernan (2) will soon undergo surgery for Batten disease. Photo: PA
Liam Heffernan (2) will soon undergo surgery for Batten disease. Photo: PA
Liam with parents Tony and Mary at the start of the Jack and Jill Children's Foundation and Bee for Battens fun run in Kenmare, Co Kerry, at the weekend
Tony and Mary lost their daughter, Saoirse (5) to the condition in January

Majella O'Sullivan

A brave little two-year-old boy will today fly to New York to undergo life-saving brain surgery.

Liam Heffernan will be the youngest child in the world to receive the treatment for late infantile Batten disease, a rare neuro-degenerative condition that claimed the life of his older sister Saoirse (5) on January 18.

Less than 1,000 children worldwide have the condition, which causes mental impairment, seizures and a progressive loss of sight and motor skills, and there is just a handful of sufferers in Ireland.

Liam, who is from Keel, Castlemaine, Co Kerry, will undergo surgery at the prestigious Weill Cornell University Hospital in New York next Tuesday.


His parents, Tony and Mary, have been told that without it, their only surviving child may not live past the age of four.

The family were enjoying the sunshine of the Easter bank holiday weekend, full of hope for the future despite the heartache they've already had to endure.

"I just can't even imagine if there was no Liam," his mother Mary told the Irish Independent.

"Liam is the driving force, without a shadow of a doubt. The days I just want to curl up and die, Liam is what will come into my head and I'll say 'cop on now, he needs you'."

The Heffernans barely had time to come to terms with their grief after Saoirse's death in January when they got the word that Liam had been invited to take part in an assessment to find out whether he was a suitable candidate for treatment.

US authorities granted a special exemption so Liam could take part in the trials because of his age, which was below the three-year-old minimum requirement. He turns three on July 3.

Saoirse narrowly missed out on undergoing the surgery in October last year because her condition had deteriorated.

"There'll only ever be 16 kids who will get this part of the trial and Liam is the strongest and the youngest," Tony said.

"Even though he's exceptionally severe in Batten's terms -- his speech is delayed, he can't swallow solid food and his balance is affected -- without the treatment, we've been told he won't live past the age of four."

The surgery takes place on May 3, a year and a day since Liam was first diagnosed.

It will involve six holes being drilled into his skull and healthy gene stem cells being transferred, which it is hoped will start recreating themselves and producing the protein that's lacking in Batten sufferers.

Evidence so far suggests this form of therapy can halt the disease and may even reverse some symptoms.

"It's the first 24 hours that are horrific because you're in the intensive care unit," said Mary.

"The day after Liam's surgery will be our 10th wedding anniversary, and that would be the best anniversary present we could get that he's all right.

"They say that once they get out of the ICU and back to the regular ward they recover well. But they do warn you that every child is different."

Tony added: "There are so many risks and a high chance of death, but we'll take those chances because we know that without it we won't get two years with him. If we got an extra 10 minutes with him, it would have been worth it."

Liam will stay in the US for a month after the surgery, but is expected to be back here for World Batten's Day on June 4.

The charity set up by the Heffernans, Bee for Battens -- The Saoirse Foundation, is helping to fund research and meet the costs of Liam's treatment. See

Irish Independent

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