Liam’s Story

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Liam Heffernan was born on 3 July 2008. He went through more in his short life than most adults. In 2011 his only sibling, sister Saoirse, lost her fight against Battens Disease. Liam was also diagnosed with Battens 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 throughout his illness. On 3 May 2011, Liam became the youngest person ever to undergo pioneering brain surgery at the Weill Cornell Medical Centre in New York. Liam spent nine hours in theatre where surgeons drilled six holes into his tiny skull and he received 12 treatments within his brain. Two days later, against all the odds, Liam chased pigeons down 1st Avenue in Manhattan.

The Saoirse Foundation funded Liam’s participation in the trial and fought to change the federal accessibility rules governing the trial to allow a two-year-old to participate.

Liam did not survive to have a normal life, but thanks to this treatment he had an extended one. He used this extra time to play with his favourite toy dinosaurs and to give his family plenty of warm cuddles. Liam’s participation in the trial showed strong results, which will inevitably lead to a cure and help other children like Liam and Saoirse. As his condition started to deteriorate, his parents were his primary carer’s providing 24/7 support for their son Liam, supported by the Saoirse Foundation. Liam was the first child ever on board BUMBLEance, and it was BUMBLEance which brought Liam home from hospital on his Angel Trip, his final journey on earth.

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

 

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