JUST weeks after they went through the harrowing ordeal of burying their second child, Mary and Tony Heffernan have been lauded for their bravery and generosity of spirit for devoting their lives to helping other seriously ill children.
Little Liam Heffernan lost his heroic battle with Battens disease on May 4 and was laid to rest beside his sister, Saoirse, who succumbed to the same rare degenerative brain disorder, at the same age, just three years earlier.
Despite the heartbreak the have endured, their devastated parents have continued to champion charitable causes through their work with a number of projects, including Bee for Battens, the Saoirse Foundation, BUMBLEance and Liam’s Lodge.
That great dedication was formally recognised on Tuesday night when the Heffernans were named fundraisers of the year at the prestigious Pride of Ireland awards.
The couple, from Keel, Castlemaine, received the award for their tireless campaigning in a bid to improve life for children with rare genetic diseases.
Tony remarked: “It will help us push on with our work with families facing the most difficult situation which they know will end in the death or suffering of their precious child.”
The gala reception, held in the Mansion House, was hosted by The Saturdays star Una Foden and TV presenter Carol Voderman, and the VIP guest list was like a who’s who of the celebrity and sporting world.
Among those to share the occasion with the Heffernans were Philomena Lee – whose life inspired the hit movie Philomena – Christine Bleakley, Jedward, Barry McGuigan, FAI chief John Delaney and Majella O’Donnell.
Also there were Imelda May, Ray Darcy, Calum Best, Nadia Forde, Louis Walsh, Shane Filan, Brian Kennedy and Claudine Keane.
Tony and Mary were presented with their Pride of Ireland award by businesswoman Ramona Nichols who is best known for her role in the hit TV series Dragons’ Den.
Little Liam Heffernan died, on his parents’ wedding anniversary, some days after being admitted to Kerry General Hospital. He passed away in Tony and Mary’s arms following a rapid deterioration in his condition which saw him go blind and lose consciousness.
After Saoirse’s death, in January 2011, the Heffernans fought to save their only remaining child’s life and travelled to New York where Liam underwent major brain surgery as part of a medical trial at Weill Cornell Hospital.
The little boy leaves a powerful legacy through the €4.5 million Liam’s Lodge,named in his honour, which his parents are establishing as Ireland’s first dedicated respite centre for children with rare diseases.
It will be built on a dedicated 10-acre site in Tralee and construction work will commence in 2015.
The Pride of Ireland awards ceremony can be viewed in full on TV3 on Thursday night at 9pm.
Battens disease: The Grim Facts
- Battens disease (Neuronal Ceroid Lipofuscinoses) is an inherited disorder of the nervous system which usually manifests itself in childhood
- Early symptoms can include vision problems and seizures as well as subtle behaviour changes, delayed speech, slow learning, clumsiness or stumbling
- Over time, the affected children suffer mental impairment, worsening seizures and progressive loss of motor skills and sight
- There are no known treatments that can halt or reverse the symptoms of Battens disease but medication can be used to reduce seizures
