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Family's heartache as Liam's (3) surgery fails

The family of a toddler who suffers from the rare Battens disease have been told that the pioneering surgery he underwent last year will not cure him.

Tony Heffernan and his wife Mary were given the harrowing news by doctors that they will eventually lose their little three year-old son Liam to Battens disease.

They travelled to the US last year so that brave little Liam could undergo new medical trials at New York's prestigious Weill Cornell Hospital, which could hopefully save his life.

Battens disease killed his sister Saoirse (5) last year before she could undergo the trials.


Mary and Tony are determined to fight the disease for Liam until the end, since new medical trials may become available next year.

Tony told the Herald: "We've been told it's not a cure and he's had a couple of seizures at this stage.

"The surgery has pushed a pause button, it's not a cure.

"I hate the disease and I hate that we have to do this and that we can't change it.

"At the moment, it looks very familiar, the downhill slide. We will lose him. We know that. No one's ever survived Battens, the odds are against it."

Liam has been off prescriptive medication to stop seizures for the last 17 months, but he will soon have to restart it.

"We're on Inch beach at the moment collecting sea shells with him.

"It's important to get time with him and we're going to take a few weeks off, away from everything.

"I don't know where Mary gets her strength from to keep going. She's always said that there'll be no sadness in our house when Liam is around. I know it hurts because I feel it where she feels it."

Tony is a member of the Rare Diseases Taskforce, and he is appealing to all Irish people who are in any way affected by rare diseases to give their points of view on www.surveymonkey.com/s/national_rare_disease_ plan_Ireland by July 30.