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Liam (2) misses sister Saoirse as he battles to beat disease that killed her

A TWO-year-old boy who will undergo pioneering brain surgery to cure a deadly disease next month misses his sister "fiercely" -- since she died of the same disease earlier this year.

Little Liam Heffernan, who has deadly Battens disease, lost his sister Saoirse (5) 11 weeks ago after the degenerative disease attacked her body so much that she lapsed into a vegetative state and eventually passed away on January 18.

His father Tony told the Herald yesterday: "It's 11 weeks [since Saoirse's death]. We just try and get through every day. We're trying to focus on Liam and use him as our medicine and focus on him as a person too because he's so positive.

"He misses Saoirse fierce. But he's so good at the moment, his new medication is suiting him. He can't swallow food so he's on a balanced liquid diet and he's thriving at the moment, and we're keeping him fit as well."

And while Liam and his parents Mary and Tony grieve for Saoirse, they face another battle as he will be the youngest child in the world to undergo the surgery.

Doctors at the prestigious Weill Cornell University Hospital, New York, will drill six holes in his skull to allow gene transfer treatment to be administered to 12 locations in his brain.

Tony explained: "There's a lot involved, the surgery is on May 3, and he'll have EEGs and scans, and they'll be shaving his head and marking his skull in six locations."

Liam's Battens disease is now more advanced than it was for Saoirse at four years of age, so his parents were delighted when he was accepted for the second generation trials at the New York hospital.

"It's not a complete surprise. We were always hopeful that he would get chosen, especially after what happened to Saoirse."

Battens Disease is a rare neuro-degenerative condition that affects babies, young children and juveniles, and the earlier Liam gets the surgery the better.

The Heffernans will be launching a viral video on their website in the next few weeks telling the story of Battens disease, and big Irish names such as Bill Cullen, Jackie Lavin and Ryan Tubridy have already given it the thumbs up.

Tony is currently calling on people to run the mini-marathon for the Bee for Battens charity on June 6, and those interested can call or text the charity on 083 0044444.