MOTHER-of-two Amanda Hughes told how she was asked to prove her son "still had Down Syndrome" in a battle to keep his medical card.
The mother said that four-year-old Ben may not have much of a voice, but she does and that she is "fighting for everything for him".
Despite the fact that Ben has made at least 13 visits to the doctor over the past 12 months, he was stripped of his medical card last year.
"Ben was born with this, he will die with this, he will live with this," she said.
"I asked on what grounds he was refused the medical card, and they wouldn't give me an answer. I appealed it and two weeks ago I was told Ben didn't meet the criteria.
"He is prone to respiratory problems and chest infections, and any illness that goes around.
"His ailments vary, so there may not be one medication that he is ever on."
The Meath native said during her fight to reinstate her son's medical card, she was even asked to prove that Ben "still had Down syndrome".
"It has to be highlighted and something has to be done. We are fighting a battle and we are just losing. He is just the most placid little loveable, cuddly teddy bear that you could ever come across. He is just so jolly, it is heartbreaking to watch this."
Any parents affected by this issue are asked to contact Down Syndrome Ireland on (01) 426 6500.
Meanwhile, Dubliner Kevin Shortall claims "it's a money-saving exercise at the expense of the sickest children in the country".
He said his eldest daughter was only recently given a year-long medical card, despite being diagnosed with cancer two years ago.
Since 2012, the father of three and his wife Tracey have been embroiled in a battle with the HSE to ensure that little Louise (8) has a medical card for her life-saving treatment.
They were given temporary six-month cards, but said the hassle they endured every time it expired was "frustrating and exhausting".
"Louise was diagnosed with a very serious form of leukaemia. Thankfully, the survival rates are very good.
"We have received world-class health care from the doctors and nurses, but trying to deal with the HSE is nearly as stressful as your child being sick, and it's still not resolved three years later.
"Last week we were issued a medical card for one year, and it will cover the rest of her cancer treatment, but it won't cover other legacy things.
"It was the minimum they could give us, and it is very welcome. We have put hours, days and weeks of effort into getting a medical card."