“Having lost our beautiful daughter Saoirse and with Liam deteriorating, we know first-hand what it is like to provide full-time care to our children with very little supports available,” Tony said.
Liam, 4, is suffering from Battens disease, an extremely rare and fatal condition that claimed the life of his sister Saoirse in Jan 2011.
The disease causes children’s bodily functions — including speech, ability to eat, mobility and sight — to slow down.
The new centre, launched yesterday and called Liam’s Lodge, will be built in Blennerville, Tralee, Co Kerry.
Tony and Mary hope to welcome the first families on Jun 4, 2015, which would have been Saoirse’s 10th birthday.
It is estimated that more than 200,000 children in Ireland are affected by rare diseases and up to half are highly dependent, often requiring round-the-clock care.
Tony said Liam’s health had been deteriorating since late last year.
“I would not say he is in a lot of discomfort because the drugs are masking a lot of that, but the seizures cause the most upset,” he said.
The little boy has lost 70% of his vision and most of his limited vocabulary. Liam can spend almost a minute just trying to call his mum. “He looks so disappointed when he can’t express himself and that is very tough to watch,” said Tony.
Liam still loves his dinosaurs, despite his illness. “Dinosaurs are a huge part of Liam’s life and the logos we use reflect that,” said Tony.
“Like Saoirse, Mary has put Liam back into the ‘happy bubble’. She does not allow anyone to be sad in front of him. He thinks he is perfect because we tell him a thousand times a day that he is.
“We are just hoping to have the strength to do as much as we can for Liam during his short life as we did for Saoirse.
“Mary and I are exceptionally close. We loved each other before we had the kids and that won’t go away, but we are going to have our hearts ripped apart because there are really difficult times ahead.”
The Heffernans purchased the site using funds raised from the Saoirse Foundation, Bee for Battens, but need to raise €4.5m to complete Liam’s Lodge and are appealing to tradesmen, builders and companies in the construction industry to get involved in the project to significantly reduce costs.
“For years we have admired the generous Irish men and women who have travelled to Africa and other countries to build hospitals, schools homes and orphanages. Now let’s do it for the children of Ireland affected by rare diseases and genetic disorders,” said Tony.