Rules and regulations but no comfort for Limerick's Shane or family

Norma Prendiville

Reporter:

Norma Prendiville

Shane Enright 4 with his siblings Aaron and Kaliyah and parents  Richard and Caroline who are at their wits’ end trying to get their Athea home adapted Picture: Marie Keating

Shane Enright 4 with his siblings Aaron and Kaliyah and parents Richard and Caroline who are at their wits’ end trying to get their Athea home adapted Picture: Marie Keating

RICHARD and Caroline Enright find themselves in a Catch 22 situation in County Limerick that is the stuff of every parent’s nightmare.

Their four-year-old son Shane has cerebral palsy and the family home in Athea needs to be adapted. But to carry out the work will cost over €80,000 and their efforts to get a top-up or extension on their mortgage have been turned down by various banks.

The only grant offered to them, a local authority adaptation grant, comes to just €15,400, because there is a wage coming in to the house. And that grant offer runs out in June.

Meanwhile, the hospital discharge letter that outlines how Shane’s  condition will develop over time lies unopened and sealed. “We were told not to read it,” explains Richard.

But whatever that future brings, it is the immediate present that has brought Richard and Caroline close to breaking point.

“We are losing the fight… we  have been fighting with the HSE, with the council, with the Minister for Disability, not to penalise us for having a wage,” Richard says.

An appeal to the Minister for Disability went on to the Minister for Housing but ultimately, they were told, the matter lies with the council.

“We are not asking for something for nothing. Give us the funding and we will pay it back. Shane is our son, it is our responsibility to provide for him.”

Now as the fight for adapted accommodation has dragged out over almost two years, and with no sign of success on the horizon,  Richard says he finishes each day saying to himself, “I have failed again today.”

He feels he has failed the son whom he promised to protect when as a premature baby in intensive care, Shane was fighting to survive.

And survive he did against all the odds. Born in August 2013, Shane was 15 weeks premature and weighed just 845 grammes.

He was immediately rushed to Cork University Hospital where he spent 70 days in an incubator and where for the first four weeks, neither his parents nor his older brother, Aaron and sister Kaliyah  was allowed to touch him.

“They couldn’t even tube-feed him.  They had to put a tube close to his heart and he was on special formula as he had to get so much vitamin every day,” Caroline explains.

“Premature lungs are like fly paper, when they close it is next to impossible to open them. But that happened multiple times.”

It was a hard, exhausting time.  One of them had to be at the hospital at all times, while every day, Richard brought Aaron and Kaliyah back to school in Athea.

Then at six weeks, an MRI scan revealed a grade four brain bleed and the neurological part of Shane’s brain covered with cysts.

“They said Shane would lie in a bed, he would have no emotion, wouldn’t breathe on his own, he would never know us. And there was nothing they could do,” Richard explains.

At eight weeks, the diagnosis of spastic diaplegia cerebral palsy came. But Shane held on. And so did his family.

“We got him through the worst and we brought him home. We thought life would be different,” Richard explains.

But life with Shane has changed a lot and has become more physically challenging over the past almost five years.

Shane now weighs 25kg and still growing while Caroline is slight and suffers from arthritis and other medical conditions.

“He is getting so big, so fast, we can’t lift him. So what are we going to do?  

“Jack and Jill help, but that is just eight hours a week and that will end in August,” she explains.

Shane also has absence seizures and no pain threshold awareness.

The situation is made even more difficult because Richard too suffers from arthritis.

The house  adaptation that they desperately need would include a double-sized bedroom, as Caroline has to sleep in the same room as Shane who frequently falls out of bed.

It would also include a wet room and storeroom for the equipment Shane uses.

Crucially  it would provide the space needed for him to walk using a special frame. Currently, Shane moves around on his knees or in his wheelchair.

But it all comes down to money and what the rules allow. And what the Enrights desperately need now is someone to unlock their dilemma and let them move on into the future.

“I want the council and HSE to come back and talk to us. We have tried all the financial institutions. We want them to come up with a plan that will allow us to provide for our son, whether a mortgage or a grant.

“We are not asking for something for nothing. We are willing to negotiate,” Richard appeals.

But he also believes there is a need for a change in the law and the rules governing disability. It shouldn’t be down to Fund-me pages. It should be about need. 

Caroline says simply on behalf of her son: “Everybody has the right to be comfortable in their own home.”

Meanwhile, the wait goes on.