A KERRY child is recovering well after a pioneering procedure in the US to help him overcome Batten’s disease, a rare disorder of the nervous system from which his sister and only sibling died earlier this year.
Liam Heffernan (2), Castledrum, Keel, Co Kerry, who underwent the brain surgery on Tuesday, was recovering very well in the intensive care unit at the Weill Cornell University Hospital in New York, his parents Tony and Mary said.
His sister Saoirse (5) died 15 weeks ago from the disease. She travelled last year to receive the brain surgery, but was not accepted for the trial as her disease was too advanced.
Since it began in August 2010, only four other children, all American, have participated in the gene transfer treatment trial.
Liam is the world’s youngest ever child to receive the brain surgery, which involved the drilling of six holes in his skull to allow the gene transfer treatment to be administered to 12 locations in his brain.
He was sitting up on his own within the first hour after surgery, enjoying very precious cuddles from his parents, according to a family statement. His recovery is expected to take four weeks.
Speaking after the procedure, Liam’s mother Mary said: “It is such a relief to see our Liam awake and alert so quickly after the surgery. We know we have a long wait ahead to see the effectiveness of the procedure, but for now we know he is doing very well.”
Liam’s father Tony said: “It was difficult to watch the clock for eight hours, without seeing him, but the team here kept us fully informed throughout, which helped us a lot . . . Liam is a special little boy, and we hope this gene therapy trial works.”
The surgeon who performed the procedure advised that from a technical point of view, the operation went exactly to plan. The couple are now hoping that Liam’s body will accept the genes, which offer him the only chance of surviving this fatal disorder.
The Bee For Battens charity (www.beeforbattens.org) is continuing its fundraising campaign to support other children with Batten’s disease.
It also wants to fund research while promoting the participation of other Irish children in medical treatment trials.