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This is Liam Heffernan, born on July 3rd 2008, this little man had a life that most adults could not relate to. In 2011 he lost his only sibling, Saoirse who was 5 years old when she lost her battle against Batten Disease, a Rare and Fatal genetic disorder which causes the brain to die. Liam also had Batten Disease.

However Liam was a courageous and tough little fighter, on May 3rd 2011, Liam became the world youngest ever child to undergo pioneering brain surgery, at the Weill Cornell Medical Centre in New York. this gene transfer medical treatment trial required for 6 holes to be drilled in Liam skull, and after 9 hours in theatre, 12 treatment procedures were carried out within Liams Brain. 2 days later, Liam chased pigeons down 1st Avenue in Manhattan.

To get Liam to New York was only one of the challenges for the Saoirse Foundation, not only had the participation of Liam in the trial need to be funded, but also the federal rules governing the trial had to be changed to allow a two year old to participate, luckily Liam had us on his side.

While Liam will not survive to have a normal life, he had an extended one, one which allowed him to enjoy an extra few months playing with his favourite toy dinosaurs. Liams participation in the trial has shown strong results which will inevitably lead to a cure and help other children, like Liam and Saoirse, and we shall be there to support those efforts.

Liam unfortunately lost his battle against Batten Disease on May 4th 2014, at the young age of 5 years, when he grew his angels wings in the arms of his loving parents, Tony & Mary Heffernan.

tonys-S4-phone-2116Prior to Liam’s passing, his final family trip on earth was in the BUMBLEance, which brough him to the family home. The Heffernan’s know first hand the importance of our BUMBLEance “Angel Trips”

Liam is also the inspiration of our new project, “Liams Lodge”, Ireland’s First dedicated Respite Centre for Rare & Genetic Disorders, when fully built will provide respite to over 1500 families a year.

Dinosaurs will roam in Ireland once more, but this time they will watch over and protect the most vulnerable in society, with the Saoirse Foundation, ensuring that we are Making Positive Life Impacts for Sick Children.