The Saoirse Foundation was created by Tony and Mary Heffernan after their daughter, Saoirse, was diagnosed with Batten’s Disease. Batten’s Disease is a rare genetic disorder which to date has always been fatal.
The Heffernan family left the hospital with no information. They had no idea what to expect, or where to look for help. They did not want this to be the case for others in a similar situation.
In March 2010, their son, Liam, was also diagnosed with Battens Disease.
Tony and Mary set up Bee For Battens at the Saoirse Foundation to provide parents, families, and all those affected by Battens Disease in Ireland with a support network and a credible source of information. As the charity grew, it began to encompass Rare Diseases and the people affected by them.
Bee for Battens was the Saoirse Foundation’s first project. It is a national organisation dedicated to the fight against Battens Disease. It is active abroad in partnership with Battens Disease Support & Research Organisations. We currently hold the Presidency of the Battens Disease International Alliance.
BUMBLEance is our second project. BUMBLEance provides a national service for critically ill children in Ireland. We ensure the safe and comfortable transportation of sick children between their home and children’s hospitals, hospices, national treatment centres, and respite centres. Working in partnership with the National Ambulance Service (NAS), BUMBLEance provides the highest standards in professional medical care, and a top-of-the range entertainment facility designed and tailored for children. Our aim is to distract, comfort and entertain Ireland’s youngest patients as they travel to and from paediatric treatment centres nationwide.
Liam’s Lodge aims to be a respite for the families who care for children suffering from debilitating disorders and life limiting conditions. While it is still in the planning stages, once Liam’s Lodge is constructed it will provide much needed respite for 520 families each year. In the long term, it will grow to thirty units on our site, supplemented by a number of satellite Lodges around Ireland. We hope to be helping over 1600 families a year in the near future.
The Saoirse Foundation is here to help critically ill children across Ireland. We deliver smiles to sick children through our three initiatives.