A BRAVE little boy who underwent pioneering brain surgery in the States is back in New York for a crucial evaluation.
Liam Heffernan (3) is the youngest child in the world to have received the treatment for Battens disease - a rare neuro-degenerative condition from which his older sister Saoirse (5) died last January.
Specialists in New York's prestigious Weill Cornell University Hospital are this week checking that his recovery is on track, six months after he was operated on.
Liam's dad Tony said that this would be the "biggest week" of his and his family's lives, as they keep their "fingers crossed" for the courageous little boy.
Tony, his wife Mary and their precious son Liam arrived in the States on Monday morning for Halloween, despite snow falling over the region.
While they said their courageous little boy seemed to be all right, they were still concerned that he may take a turn for the worse. "Doubts can't be avoided," Tony said, adding that he was "really nervous".
Liam travelled to the US last May for stem cell therapy, which involved drilling six holes in his skull to allow gene transfer treatment to be administered to 12 locations in his brain.
His parents were told that without this treatment, Liam may not survive past his fourth birthday and doctors were so pleased with his progress that they allowed him to stay in Ireland until his six-months check up. "Things are doing okay, so we're happy but we live day by day - if Liam's good today, that will do us," his dad said.
"He's been off his anti-seizure medication since August. He goes to playschool five mornings a week, we have a personal assistant for him who carries out his physio and speech therapy, and looks after him in case he has any problems."
Liam's improved condition and the family's financial situation has forced Tony to return to work and be away from home quite frequently.
He said: "I gave up work between March 2010 and July 2011 so that I could look after Saoirse and Liam, but we have no choice financially. We don't want to rely on charity."
Tony revealed that he and his wife had only recently come to terms with Saoirse's death on January 18.
"We miss Saoirse everyday," he added.