A little boy from County Kerry is in New York this week with his parents hoping that there is more than a little hope for their son as a result of the family’s transatlantic flight.
Liam Heffernan will be the youngest child in the world to receive specialized treatment for late infantile Batten disease, an extremely rare neuro-degenerative condition that claimed the life of his older sister, Saoirse, back in January.
Liam, who is from Keel, Castlemaine in County Kerry, is scheduled to undergo surgery at the Weill Cornell Medical Center next week.
According to the Irish Independent, Liam’s parents, Tony and Mary, have been told that without the surgery, their only surviving child may not live past the age of four.
Saoirse was not passed for surgery in October of last year because her condition had deteriorated.
Liam is to stay in New York for a month after the surgery, but is then expected to be back here for World Batten’s Day on June 4.
The charity set up by the Heffernans, Bee for Battens - The Saoirse Foundation, is helping to fund research and meet the costs of Liam’s treatment. The address is www.beeforbattens.org.