By David Raleigh
A disabled Limerick boy cannot use his wheelchair, and cannot wash properly or adequately at his home because the property is too small, his heartbroken parents have said.
Shane Enright, who has a variety of complex medical issues, uses his knees to get around his home as it is not wheelchair friendly.
His devastated parents Caroline and Richard from Athea, Co Limerick, who both have arthritis and other health issues, said they cannot continue to lift their son into their bath to wash him.
Four-year-old Shane is washed once a week, his parents said.
They said they have no option but to try to keep their story in the public eye, as they feel their situation is being ignored by their local politicians.
Breaking down over the stress of it all, Shane’s mother said: “I just feel hopeless watching Shane suffering every single day. It's just not fair for a child that has suffered more than enough already. He tries so hard.”
Shane was born premature and with multiple cysts on his brain. He has Spastic Diplegia Cerebral Palsy which has left him with little or no control of his legs and hands.
He also has chronic lung disease, kidney problems, and is in constant leg pain as his spine is not growing properly, his parents said.
“He's got chronic lung disease. He is sick quite a lot, Shane picks up every sickness and he needs to be made comfortable in his own home,” his mother added.
“If we don't get this build, Shane's spine is going to keep growing wrong because he is not using the equipment that he has to use."
Shane’s parents said they both under extreme stress as they each suffer from severe health issues.
Richard Enright, who has chronic arthritis, and cannot lift his son, is undergoing hip surgery today. His wife has kidney disease and arthritis.
Fighting back more tears, Ms Enright said: “My kidneys are only functioning at 43% and I’m facing dialysis in the next few years. What happens to Shane if I go for dialysis. I have nobody to care for Shane. Richard can’t do it because of his medical issues.”
“If the house isn't adapted for Shane I really don't know what's going to happen,” she added.
Shane’s parents said they feel they have “left down” their son.
“It’s hard to look him in the eye, after promising him, that if he fights to live, that we will make his life as comfortable as is humanly possible.”
“We have failed him because the house is not suitable for him. He is getting more health conditions because of that, and that’s all our fault because we can’t adapt the house.”
Ms Enright said her two other children are also suffering because of the stress on the family.
“All we want is someone to help us to do the extension and just let us get on with our lives. We can’t do that until the extension is done to make life comfortable for Shane. Shane needs to be comfortable," she added.
The estimated cost of the extension is around €80,000.
The distraught couple applied for a maximum €30,000 home adaption grant for disabled persons but, after a means test analysis, they were informed they would be entitled to only half the grant.
The family have set up an online GoFundMe fundraising account entitled “Space For Shane” to try to make up the shortfall for the cost of the extension.
Shane's parents said they are in “a ludicrous situation” because the HSE has provided Shane with a wheelchair, and a walker - which are key to his physical development - but he cannot use them in their cramped home.
They said that Shane’s Occupational Therapist wrote a report in 2015, stating he needed a wet room, a bathroom with a hoist, a larger bedroom, and a storeroom for his medical equipment.
Mr Enright said: “We are begging for raw materials to build this extension for our son... anyone who owns builder hardware shops, or anyone that can supply us with materials."
"We need concrete blocks, groundwork, mesh, sand and cement, timber, slates, windows and doors."
“Shane is going to be behind because of this. We got an occupational therapist’s report in 2015, and for Shane to continue to physically and mentally (develop), he should have been learning with his equipment a lot earlier so this has already set him back.”