The Saoirse Foundation is a registered non-profit charity dedicated to making positive life impacts for sick children. The charity was founded by Tony and Mary Heffernan in 2010 after their daughter, Saoirse, was diagnosed with Batten Disease (Neuronal Ceroid Lipofuscinoses – NCL) – a rare and fatal neurological condition.
Following Saoirse’s diagnosis, Tony and Mary were given no information, they had no idea what to expect, and they did not know where to seek help. Their determination that other families should be spared what they went through motivated them to create an advocacy charity to raise awareness about rare and genetic disorders, and to become actively involved in Irish and international medical research initiatives and steering groups. Thus The Saoirse Foundation was born.
When the Heffernan’s son, Liam, was also diagnosed with Batten Disease, Tony and Mary decided to expand the charity’s remit to include children suffering from cancer, chronic illnesses or life-limiting conditions. The charity’s first project was Bee for Battens a support network and a credible source of information for parents, families, and all those affected by Batten Disease. Tony Heffernan has held the president of the Batten Disease international Alliance since 2010
The Saoirse Foundation’s second project was Bumbleance , the world’s first ambulance service designed and tailored exclusively for children. Liam had the distinction of being the first-ever child on board a BUMBLEance. And it was also BUMBLEance that brought Liam home from hospital on his Angel Trip in 2014, his final journey on earth. BUMBLEance delivers smiles on a daily basis, in memory of the bright and beautiful smiles of Saoirse and Liam.
The third project under the auspices of The Saoirse Foundation is the planned Liam’s Lodge, which will provide much-needed respite for the families who care for children suffering from debilitating disorders and life-limiting conditions.
We are very grateful to all those who have helped us reach where we are, and we look forward to welcoming new supporters who will empower us to help even greater numbers of children with rare diseases.
• Our ethos is to give a voice to the sick children of Ireland, and to put the happiness, delight
and well-being of these children first in everything we do
• Our mission is to make positive life impacts for sick children and their families
• Our goal is to deliver smiles to sick children by supporting their families
• Our objective is to maximize our impact, broaden awareness, and deepen the national conversation about rare disease and genetic disorders
• Our vision is to create an Ireland where children and families affected by Batten Disease and other genetic disorders have access to the best quality of life
• Our ethical value is to treat our clients, staff, volunteers, partners and stakeholders with the respect and dignity they deserve
• Our promise is to deliver long-term sustainable initiatives which fulfill The Saoirse Foundation’s vision, mission and objectives