Saoirse Heffernan was born in June 2005. She was energetic, full of life, and 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.
In 2009 Saoirse started having uncontrollable seizures, sometimes up to 200-300 a day. It took months before doctors finally diagnosed Saoirse in September 2009 as suffering from the fatal Batten Disease. Tony and Mary Heffernan left the hospital with no information about the disease or where to seek support. Devastated by the news that their daughter had a fatal condition, and determined that other parents would be spared a similar experience, the Heffernan’s founded The Saoirse Foundation in order to offer families the support unavailable elsewhere. The Bee For Battens Organisation was The Saoirse Foundation’s first project.
Over the next sixteen months, Saoirse’s condition diminished rapidly, she lost every bodily function, except her ability to hear. Her parents had to travel with Saoirse from rural Ireland to Dublin to access specialist services and care. This constant travel, and the loss of dignity that Saoirse endured on these journeys, motivated the Heffernan’s to create BUMBLEance the Children’s National Ambulance Service.
During Saoirse’s final months, she became totally bedbound and required 24-hour home care. On 18 January, 2011, aged just 5 years old, Saoirse grew her angel wings in the arms of her parents. Her bright smile and loving personality are remembered by everyone who met her.
Saoirse’s brother, Liam, was born on 3 July 2008, and was diagnosed with Batten Disease before his second birthday, less than a year before Saoirse lost her fight against the fatal disease. Despite his illness, Liam was a courageous and tough little fighter, with a deep love of dinosaurs. He could always be found carrying his toy “long neck ”.
On 3 May 2011, Liam became the youngest patient ever to undergo pioneering brain surgery at a medical trial at the Weill Cornell Medical Centre in New York. The Saoirse Foundation helped fund Liam’s participation in the trial. After the Heffernan’s challenged the federal accessibility rules so that two-year-old Liam could participate, he spent nine hours in theatre. Surgeons drilled six holes into his skull and he received 12 treatments within his brain. Two days later, against all the odds, Liam was chasing pigeons down Manhattan’s First Avenue.
Later in 2011, Liam won a National Child of Courage Award, presented by broadcaster Miriam O’Callaghan of Share a Dream Ireland. After the ceremony, his father Tony said that Liam “was taking it all in his stride.” Liam’s exceptional bravery also won the family a holiday in Disneyland Paris.
Liam’s participation in the medical trial showed strong results, which will hopefully lead to a cure and will help other children with Battens Disease. Although Liam did not survive to have a normal life, his surgery at least extended his life. He used this extra time to play with his favourite toy dinosaurs, and to shower his family with plenty of warm cuddles. As Liam’s condition started to deteriorate, his parents were his 24/7 primary carers. Liam had the distinction of being the first-ever child to travel on board a BUMBLEance in 2013. Liam’s final trip on BUMBLEance was his Angel Trip when he came home for the last time from hospital in 2014.
Liam lost his brave battle on his parents’ wedding anniversary, 4 May 2014. He was five years old when he grew his Angel Wings in the arms of Tony and Mary. Liam’s name will be perpetuated in Liam’s Lodge Children’s Respite Centre , which will provide much-needed respite for the families who care for children suffering from debilitating disorders and life-limiting conditions.