Saoirse Heffernan was born in June 2005. She was energetic and full of life. Saoirse was famous for her huge hugs. She comforted every child she met who was sad and crying, or very sick. She proved that a hug and a little love can make every situation a little better! Every day was an adventure for Saoirse. But things changed in 2009 for the worse. Saoirse started having uncontrollable seizures, occasionally experiencing 200-300 seizures a day. It was months before doctors could identify Saoirse’s condition but at 12:45pm on the 25th of September 2009, Saoirse was diagnosed with the fatal Battens Disease.

The Heffernan’s left the hospital with no information about the disease or where to seek support. Devastated by the news that their daughter was going to die from this fatal condition, Tony and Mary founded Bee for Battens and the Saoirse Foundation was born. The Heffernans did not want other parents to have a similar experience. The Saoirse Foundation offers these families the support they can’t receive elsewhere.

Over the next sixteen months Saoirse lost every bodily function, except her ability to hear. Her parents were faced with the need of travelling with Saoirse from rural Ireland to Dublin to access services and care. These constant travel struggles and the loss of dignity when caring for her en-route were the foundations which led to her father, Tony, creating BUMBLEance, the children’s national ambulance service. During Saoirse’s final months, she became totally bedbound and was fully dependant requiring 24 hour care in her home, until, in the arms of her parent, grew her angel wings on the 18th January 2011. She was just 5 years old.

Her bright smile and loving personality are remembered by everyone who ever met her and also through the Saoirse Foundation. Everything we do is in order to help very sick children like Saoirse. We want to deliver smiles as bright as Saoirse’s. And we will continue to deliver smiles in the future.