When Tony & Mary Heffernan were told that their only daughter Saoirse had Batten Disease on the 25th of September 2009, they left the hospital in Dublin with no information about Batten Disease, what to expect or where to look for help. They vowed that this would have to change.
In March 2010, the Heffernan family received more bad news when their son Liam was also diagnosed with Batten Disease.
Tony and Mary decided to set up the Saoirse Foundation to provide parents, families and all those affected by Batten Disease on the island of Ireland with support, networking and a credible source of information.
Bee For Battens
Bee For Battens is a 32 county organisation in Ireland and is active abroad in developing international collaboration amongst Batten Disease Support & Research Organizations. We currently hold the Presidency of the Batten Disease International Alliance.
Liam’s Lodge is Tony Heffernan’s dream that will support thousands of Irish families and will answer the pressing need for respite for those families who care for children suffering from a range of conditions from debilitating disorders to life limiting conditions. Located outside Tralee and close to Kerry General Hospital, phase one will see an initial ten specially designed units of Liam’s Lodge constructed to provide a week of much needed respite for 520 families each year. The centre will also develop accurate information systems and provide professional, accredited & specific training modules and packages to care providers and care practitioners in the field of rare and genetic disorders. In the longer 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.
BUMBLEance is the most technologically advanced ambulance on the planet. BUMBLEance has everything on-board to remove the stress of ambulance journeys, including the latest games on SONY PlayStation, iPad’s & Apps, Audio & Video entertainment, etc….with its own WiFi onboard!
We are here for the sick children of Ireland, both from rural and urban areas, who are long term sick and /or seriously disabled, who need professional ambulance transport services. Catering for their every need en route to and from the principal centres of care.