Family and friends of Liam Heffernan, who has Battens Disease, were praying for him yesterday. A special Mass was offered in Holy Cross Church, Kenmare, hometown of his mother Mary.
She and her husband, Tony Heffernan, are with him at the prestigious Weill Cornell University Hospital where the operation was expected to take up to eight hours.
Liam is the youngest ever child to undergo the pioneering surgery which involves the drilling of six holes in his skull to allow gene transfer treatment to be administered to 12 locations in his brain.
Speaking prior to the start of the operation, Mr Heffernan described his son a “tough campaigner”. The family remains confident he was strong enough and fit enough for all that lay ahead.
“Recovery will be the most intense part of the entire procedure which may involve some pain and some serious discomfort,” he said.
“That said, doctors are also confident that Liam will make a quick recovery and may be out within the week.”
Liam is the Heffernans’ only surviving child as their daughter, Saoirse, aged five years, died from the extremely rare Battens Disease last January at the family home in Keel, Castlemaine.
The couple have been in New York since last Wednesday while Liam underwent preparations for his surgery.
Post surgery, he will have a series of weekly check-ups and the Heffernans are hoping to be back in Kerry for World Battens Day, on June 4, also the late Saoirse’s birthday.
They will be returning to New York, in early July, and again in August for further medical examinations to determine if the surgery is successful.
The Heffernans have founded the Saoirse Foundation to provide parents, families and all those affected by Battens Disease across the 32 counties with a home-based support and networking organisation.