Liam Heffernan was born on 3 July 2008, and was diagnosed with Batten Disease before his second birthday on 2 March 2010. In 2011, his only sibling, sister Saoirse, lost her fight against Batten Disease. Despite his illness, Liam was a bright child with a deep love of dinosaurs. He could always be found carrying his toy “long neck”. Liam was a courageous and tough little fighter.

On 3 May 2011, he became the youngest person ever to undergo pioneering brain surgery at a medical trial at the Weill Cornell Medical Centre in New York. The Saoirse Foundation funded Liam’s participation in the trial, after fighting to change the federal accessibility rules so that two-year-old Liam could participate. Liam spent nine hours in theatre where surgeons drilled six holes into his skull and he received 12 treatments within his brain. Two days later, against all the odds, Liam was chasing pigeons down Manhattan’s First Avenue.

Liam’s participation in the medical trial showed strong results, which will hopefully lead to a cure and will help other children with Battens Disease.

Later in 2011, Liam won a National Child of Courage Award, presented by broadcaster Miriam O’Callaghan of Share a Dream Ireland. As a reward for his exceptional bravery, Liam won a holiday for himself and his parents to Disneyland Paris. After the ceremony, Tony Heffernan said that Liam “was taking it all in his stride.”

Liam did not survive to have a normal life, but this treatment at least extended his life. He used this extra time to play with his favourite toy dinosaurs, and to shower his family with plenty of warm cuddles. As Liam’s condition started to deteriorate, his parents were his primary carers, providing 24/7 support, and benefitting from the support of The Saoirse Foundation. Liam had the distinction of being the first-ever child aboard a BUMBLEance. And it was also BUMBLEance that brought Liam home from hospital on his Angel Trip, his final journey on earth.

Liam lost his fight against Batten Disease on his parents’ wedding anniversary, 4 May 2014. He was five years old when he grew his Angel Wings in the arms of his loving parents, Tony and Mary.

In memory of Liam, The Saoirse Foundation is planning to build Liam’s Lodge Children’s Respite Centre, which will provide much-needed respite for the families who care for children suffering from debilitating disorders and life-limiting conditions. Liam’s Lodge will eventually help thousands of families a year.