A brave Liam Heffernan (5) whose older sister Saoirse died from rare brian disorder Battens Disease has passed away after battling the condition for three years.
The moment Tony and Mary Heffernan had dreaded, but knew was inevitable, came to pass this weekend at the family home in Keel, Co Kerry when their little champion finally lost his fight for life.
Liam was just two months away from his sixth birthday and passed peacefully away in the arms of his parents on their wedding anniversary.
His sister died from the condition three years ago and they will lie side by side in the family plot in Keel Cemetery.
A statement on behalf of Tony and Mary said: “We now face our biggest fear, which wasn’t just picking up the white coffin casket of our son Liam, but lowering Liam into his grave, alongside his sister Saoirse, we now face this in the coming days.”
Liam who loved dinosaurs and books had captured the hearts of the nation and people abroad who learned of his brave battle against Battens Disease, an extremely rare and degenerative brain disorder that also stole his sister Saoirse at the age of five. Liam’s condition had deteriorated significantly over the last few months and rapidly over the past few days resulting in him being admitted to Kerry General Hospital.
The little boy was suffering from multiple seizures and had lost his sight. His ability to swallow had already been taken.
On Wednesday he was transported home in BUMBLEance, the child-friendly ambulance owned by the Saoirse Foundation, the charity set up by his parents in his sister’s memory.
The couple also thanked the doctors, nurses and carers who helped Liam over recent weeks as his condition worsened.
Though his life was cut short, Liam’s legacy will continue to help hundreds of children.
Liam’s Lodge will be Ireland’s first dedicated National Respite centre for Rate Disease, built on a 10-acre site in Blennerville, Co Kerry.
The Heffernans plan to start construction of the centre next year and have appealed for public, corporate and Goverment support.