Pioneering brain surgery is ‘only hope’ for boy aged two

Liam Heffernan, who suffers from Batten’s Disease, will leave from Dublin Airport today to participate in a medical treatment trial in the United States.

The surgery, which involves six holes being drilled in Liam’s skull, is scheduled to take place on Tuesday May 3 – exactly 15 weeks after his only sibling died from the same rare and fatal disorder of the nervous system.

His sister, five-year-old Saoirse, died in the arms of her parents Tony and Mary on January 18.

Mr Heffernan said the treatment in New York was the couple’s only chance of saving their only child.

“There’s no guarantees with this and we know that,” said Mr Heffernan. “But this is the second time they’ve got kids on this trial and it’s proved positive so far so we just hope Liam has the same result. It means everything to us.”

Less than 1,000 children worldwide have Late Infantile Battens Disease, an inherited disorder of the nervous system which causes mental impairment, seizures and progressive loss of sight and motor skills. Youngsters become totally disabled before they die.

Early symptoms include vision problems or seizures, delayed speech, slow learning, clumsiness or stumbling.

The family, from Castledrum in Keel, Co Kerry, will travel to the prestigious Weill Cornell University Hospital for the surgery, which involves gene transfer treatment to twelve locations in Liam’s brain. Since the medical trial began in August 2010 only four children, all of whom are American, have received the gene transfer.

The trial co-ordinators recently got permission from the US federal authorities to treat Liam following their application to reduce the participation age below the minimum age requirement of three.