A KERRY-BASED family flew out of Dublin airport for the United States yesterday hoping for a life-saving operation for their young daughter.
Five-year-old Sorcha Heffernan is suffering from the very rare Battens disease, which essentially stops the brain from recycling brain cells.
In the recent past Sorcha has become legally blind, lost the use of her legs and has had to revert to nappies.
Before now there had been no known cure and parents Tony and Mary Heffernan were devastated to learn this year that the disease is also affecting their two-year-old son Liam.
But now pioneering surgery in the United States, which concentrates on injecting a missing genitive gene into the brain in up to 12 places, has been given clearance for a human trial.
Sorcha has been accepted for the trial, subject to some “hopefully minor affirmations” to be carried out in New York next week. All going well she should have the operation next Tuesday, October 12th. If successful the hope is that it would also be suitable for Liam.
“We have some hope the damage already done can be reversed to some extent,” said Tony, who explained the condition was a result of an extremely rare genetic deficiency being shared by both himself and Sorcha’s mother, Mary.
Family and friends in the Castlemaine area have helped the family with the cost of trips to the United States and a new charity, which is at beeforbattens.org has been set up to help others who suffer from the condition.
