TWO YEAR OLD LIAM Heffernan is to undergo pioneering brain surgery in America next month for the disease from which his older sister died.

Liam has Battens Disease, a rare neuro-degenerative condition that affects young children and babies. His sister Saoirse died just over 3 months ago of the disease at the age of 5.

Liam Heffernan will become the youngest person to receive the pioneering treatment for Battens Disease at the Weill Cornell University Hospital in New York.

The Evening Herald reported earlier this month that Liam will go to America with his parents Tony and Mary for the surgery.

This will involve having holes drilled in his skull to allow gene transfer treatment. Usually it is reserved for children over the age of three, but a special exemption was made in Liam’s case.

The family are from Castlemaine in Co Kerry.

Tony and Mary set up the Bee for Battens Saoirse Foundation to provide support to all those affected by Battens Disease in Ireland and raise money to put towards the costs of Liam’s treatment.

Liam’s father told the Irish Independent that there are many risks with the surgery, including the chance of death, but the family are willing to take the risk “because we know that without it we won’t get two years with him”.

His surgery will take place on 3 May.

The family recently released a information video on Battens Disease: