Liam McEntee (5) celebrates his first day of school on Wednesday at Clonbern national school in Co Galway.
It is an occasion that his family feared he would never see when he was born prematurely at 23 weeks, weighing just less than one pound and suffering from chronic lung disease and infections leading to multiple operations,the loss of his left leg and a dependency on a tracheotomy tube. He spent the first four years of his life in hospital.
His mother Louise McEntee maintains that the HSE has a lot to learn from Liam’s case particularly in the area of home care packages.
She told RTE's Morning Ireland: "The HSE has a lot of lessons to learn in this sense because they're destroying a whole family, not only the child itself developmentally, they're putting everybody's lives on hold within the family unit."
Ms McEntee suggested the HSE should “try and get their home care package sorted and quickly” and get patients out of hospital and closer to home.
“We were separated as a family for a long time - for four years - my two older lads, their lives are only staring now since Liam came home because all our lives were on hold when he was on hospital for that length of time.
“It took nearly two and a half years to secure a home care package to get Liam actually home to his home environment and that took an awful toll on the family.
"The lads now are both working, we couldn't afford to send them to college because we were paying for our mortgage here and we were also paying for parents' accommodation in Crumlin hospital, so money was very tight, non existent at times, so the lads' lives were affected as well."
Liam was very ill for the first two years of his life, she explained.
“The rest of the time we were just waiting to get back to Galway, or get home.
“That’s why I contacted Liveline, I couldn’t bear to spend another year in Crumlin because I knew Liam wouldn’t develop any more than he would at that stage, he needed to be at home or closer to home so that the family could actually see him, and interact with him and give him some life skills.
“He couldn’t do that in Crumlin because he was in isolation all the time, he wasn’t allowed to play with children or go down to the playroom.
“He was quite isolated for all that time in hospital so getting back to Galway was the start of getting home.
“Two years on, he has got on so well, today starting mainstream school is a day we never thought we’d see.
“He’s like any normal five year old, he gets up he looks for the iPad, he communicates with the iPad, he has no words, his only way of communication is through sign language and if we can’t get what he’s trying to tell us then he goes to the iPad and points it out to us.
“Like every other child he loves his trains and his television, just normal. We were told he would have severe cerebral palsy and be very brain damaged but we hope that his global developmental delay is only due to his long term admission in hospital.
“We hope that as the years go on he will balance out to any normal child his age. He’s coming in at a developmental age of four so he’s catching up quite quickly since he came home.”