THE PARENTS OF a young boy with a rare disease have appealed to the HSE to reinstate their son’s medical card.
Annette and Declan Coyle have launched an online campaign drawing people’s attention to their son’s plight.
Last night, they appeared on the Saturday Night Show to speak about their son Alexander (10), who was the first person in Ireland to be diagnosed with Mowat Wilson Syndrome.
The syndrome means he has a profound intellectual and physical disability, which brings life-threatening problems and seizures.
He is hospitalised often and is also tube-fed.
Declan Coyle tweeted a photograph of his son in hospital recently to raise awareness of his situation. The photograph was taken when Alexander was in hospital after a very serious seizure.
He is now at home and no longer in intensive care.
Medical costs
Annette Coyle told the Saturday Night Show that the medical card would have paid for the syringes used to provide Alexander’s medication, all of the equipment associated with the feeding pump, nappies and more.
Alexander is in a special part of the house that his parents added on to their own home. They said they are now left to source all the equipment that the HSE would previously have helped them source.
They brought in a week’s worth of some of the equipment to the show:
They were told by letter two weeks ago that their son had been denied a medical card, and wasn’t eligible for a GP card. It was suggested that the family should look into a long-term illness card.
“The fact of the matter is there is no more information you can really give them – they have got it all and yet now we’re into more form filling to get it,” said Annette of the HSE.
Declan said he put the photograph of his son online because “basically I was in shock, I couldn’t believe it”.
He said that “the strength of a nation is how they look after their most vulnerable”. “If this is what the nation has become, it is just appalling,” said Declan.
He said people have expressed anger and disgust to him “that we take our most vulnerable and sickest people and this is how we treat them”.
Annette said that if they had “pots of money” they would not go through the process of applying for a medical card.
“We don’t want to be a burden on the State,” she said.
Annette said that for the most basic items needed for their son, the cost is at minimum €1100 per month.
They said that they could put him into State care, which would cost the State hundreds of thousands of euro, but they do not want to do this.
“It has been hugely upsetting for us,” said Annette.
The level of care and the expense of it – unless you were a multimillionaire, really it’s just not doable.
She added that “so many people are facing this problem, they are so exhausted by what goes into caring for the child they the don’t have the energy” to appeal after a medical card is revoked.
To watch the interview, go to the RTÉ Player.
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