Saoirse Heffernan was born in June 2005 and for the first four years of her life, she lived a fun filled day every day. All that changed in 2009 when Saoirse started to have uncontrollable seizures, sometimes in excess of 200 in a single day. A very content and loving child, Saoirse loved life, her family and pets, her big blue eyes and extra special hugs are world famous.

The picture with Saoirse wearing the red t-shirt was taken in September 2009, shortly after she was diagnosed with a Rare & Genetic Condition called Batten Disease. Devastated by the news that their daughter was going to die from this fatal neurological condition, Saoirse’s parents, Tony & Mary Heffernan founded Bee For Battens, and the The Saoirse Foundation was born.

Having been left alone, isolated and without any support, or information on how to care for their child, Saoirse’s parents led the way in ensuring that no other parents and families would never have similar experiences.

Over the next 18 months, Saoirse lost every single bodily function, except her ability to hear, until she became totally dependent, bed bound until finally she grew her Angel wings on Jan 18th 2011, at the tender age of 5 year, 7 months and 14 days in her parents arms.

Saoirse is the inspiration for our charity, and watches over us to ensure that we are “Making Positive Life Impacts For Sick Children”.