The Saoirse Foundation
In September 2009, when Tony and Mary Heffernan were told their only daughter, Saoirse, had Batten Disease they left the hospital in Dublin with no information regarding what to expect, or where to look for help.
In order to spare other families from a similar experience, the Heffernan’s created The Soairse Foundation – a charity that raises awareness about Batten Disease and other rare genetic disorders. The charity works closely with medical professionals, researchers and other international charities to provide patient support, advocacy, and funding for research into Batten Disease.
The Saoirse Foundation has continued to grow and expand, assisting more and more families affected by Batten Disease and other rare conditions. The charity launched BUMBLEance,the Children's National Ambulance Service, in 2013 – the world’s first dedicated ambulance service specifically designed and tailored for sick children.
Saoirse's younger brother, Liam (the Heffernan's only other child,) also died from Batten Disease. Liam's Lodge, a respite facility in Tralee, Co. Kerry, is currently in the planning stages. Families of children with rare diseases will be able to come and be relieved of the stress of caring for the child in a loving, homely environment.