Irish Battens disease toddler will receive life-saving surgery in New York

Liam Heffernan, the 2-year-old Kerry toddler has been approved for life-saving brain surgery in New York City.

The toddler suffers from Batten’s Disease and is set to become the world’s youngest child to undergo the specialized surgery.

The surgery will involve six holes being drilled in Liam’s skill and is scheduled to take place on Tuesday May 3, 15 weeks to the day that his big sister died from the same rare disease. Five-year-old Saoirse died on January 18 in the arms of her parents Tony and Mary.

Tony Heffernan said that Liam’s treatment in New York is the only chance of saving their toddler’s life.

“There’s no guarantees with this and we know that,” said 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 then 1,000 children worldwide have Late Infantile Battens Disease. The disorder effects the nervous system and causes progressive loss of sight and motor skills. Sufferers become completely disabled before they die.

The Heffernan family will make the familiar trip to Weill Cornell University Hospital in New York for the surgery, which involves gene transfers.

Only four children, all of whom have been American have received the life-saving treatment since the medical trial began last August.

U.S. federal authorities had to grant permission to the trial co-ordinaters to reduce the age requirement for the procedure, so Liam could be included.

Tony Heffernan said that while Liam possesses the vitality of an average two-year-old, he is beginning to lose his balance and is on a liquid diet.

“He is a typical two-year-old boy,” said Tony. “Full of life and full of interaction, a sweetheart one minute and a gangster the next.”

After his treatment, Liam will remain in the U.S. for one month and is expected to return to Ireland at the beginning of June, in time for World Batten’s Day.