Battens boy Liam Heffernan: 'Little Liamo has grown angel wings and joined his sister in Heaven'
Boy (5) dies in arms of parents after suffering from rare disease that also claimed life of five-year-old sister
Published 05/05/2014 | 02:30
JUST two months away from his sixth birthday, little Liam Heffernan passed peacefully away in the arms of his parents on their wedding anniversary.
The moment Tony and Mary Heffernan had dreaded, but knew was inevitable, came to pass at 6.58am yesterday at the family home in Keel, Co Kerry.
Their little champion finally lost his battle for life against Batten's Disease, just as his older sister Saoirse (5) had three years before.
Tony, who has been keeping online followers informed of Liam's struggle against the condition, tweeted a heartbreaking message confirming the news.
"Little Liamo has grown angel wings and joined sister Saoirse in Heaven," he said, before adding: "RIP son. Super Hero".
The siblings will lie side by side in the family plot in Keel Cemetery, just down the road from their home.
Tony and Mary later 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."
The little boy, who loved dinosaurs and books, had captured the hearts of the nation and people abroad who learnt of his brave battle against Batten's Disease, an extremely rare and degenerative brain disorder that also stole the life of Saoirse.
Liam's condition had deteriorated significantly over the past 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.
He also lost his ability to swallow.
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.
Liam's brave battle started in March 2010, when he was first diagnosed with Batten's Disease – just five months after his sister's diagnosis.
His parents left no stone unturned in a search for treatment that would help – and mounted a tireless campaign for the benefit of not only their own children, but children everywhere affected by Batten's and other rare diseases.
Liam travelled to the Weill Cornell Hospital New York in May three years ago, where he underwent eight hours of brain surgery as part of a medical trial, the only hope the Heffernans had of extending his life.
The family expressed their gratitude to all those who helped extend and improve their son's life, though only for a short period following the trial.
And even though his life was cut tragically short, Liam's legacy will continue to help hundreds of children.
'Liam's Lodge' will be Ireland's first dedicated National Respite Centre for Rare 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 government support, so that Liam's Lodge opens in 2016.
Despite their devastating grief, they have vowed they will forever campaign to raise awareness of Batten's Disease, support families, and fund treatment trials and research.
* Donations can be made to: The Saoirse Foundation, AIB Tralee, Co Kerry Account No: 85130187; Sort Code: 93-62-19; IE13AIBK93621985130187; Swift Code: AIBKIE2D
Postal donations can be made to: Bee For Battens, The Saoirse Foundation, Castldrum, Castlemaine, Co Kerry, Ireland.
You can also donate by sending old mobile phones free of charge to: The Bee For Battens Appeal, Freepost, PO BOX 7958, Dublin 11.
More details available on: www.beeforbattens.org