'All we want is some help so we can keep Mark at home'
EVERY room in the Duffys' modest family home has been adapted for their beloved first-born child.
Sitting rubbing 10-year-old Mark's hand as breath wheezes through his lungs, his mother Linda Duffy (38) said all they wanted from the case was full-time nursing care for their son to help keep him in the home they have designed for him.
Glancing at her husband Anthony (47), the mother of three said they don't have the money for the €500,000 legal fees bill expected to land any day on the doormat of their semi-detached, two-storey home in Cabinteely, Co Dublin.
Linda works as a primary school teacher while Anthony works in maintenance with the charity, St John of God.
Like most squeezed middle-income families, their earnings provide just enough to get by, to buy schoolbooks, food, clothes and provide the basics for Mark and his siblings, Conor (5) and Katy (3).
"It is exactly what the Government wanted, to squash this case," Anthony said.
"If we'd got this case through it would have opened up a can of worms for all the other cases that are lining up. Obviously, the Government doesn't have the funds for it."
He said it was a "frightener" for anyone taking on a case, some would be reluctant to "take the chance".
Mark is wheelchair-bound, suffers seizures, wheezes with chronic lung disease, relies on oxygen and is completely dependent on his parents and medical care 24 hours a day. Each year varies but he may visit Temple Street Children's hospital six times a year for two weeks at a time.
Each day he goes to a special care service, Carmona Services, run by St John of God. Each evening it takes them two hours to administer his medication.
"We've been granted four nights with a lot of pressure and fighting against the HSE. We got four nights of eight hours of mercy care," Anthony said.
"If we were getting the support from the Government and the help from the Government at home, we would never have taken the case on," his mother explained.
"You are just at the mercy of the HSE. At the moment we are waiting to see if he will be sanctioned with the medical card, as it is out of date. We've sent all the information they need and they still can't give us an answer."
All the family hoped to achieve from the case was a full-time nurse to help care for Mark, so he could remain in their family home.
Linda explained that he is currently moved between various respite services and they believe the lack of continuity contributes to his spells in hospital.
"We thought we might be able to make Mark's life a little bit better, that he wouldn't be sent away all the time," Linda said.
"This was never to get a big whack of money," Anthony added, saying they were just trying to keep Mark at home and save the State the €200,000 a year they estimate it would cost if he was in full-time residential care.
"The Irish system is so wrong. It is not looking after the child, especially not the child with special needs," Linda said.