David with his family in hospital following his sister Lynn’s wedding
The family of a 33-year-old Dundalk man with locked-in syndrome are appealing for help to bring him home after two years in hospital.
David Garvey’s family say it will cost in the region of €400,000 to bring him home but the HSE has turned down their homecare package application.
Lynn Flood, David’s sister, fears he will died if he isn’t allowed to come home from the Beaumont hospital.
David’s condition means he is unable to move his muscles, talk or swallow while he relies on a ventilator to help him breath.
His neurosurgeon at the Beaumont says they have done all they can for him and he’d be better off at home.
However, the family’s application for a homecare package was turned down by the HSE on Wednesday, despite the family’s belief that it would cost more to keep David in hospital.
Experts believe David could die within months if he is not moved from hospital where he might pick up an infection.
However, the 33-year-old cannot be discharged unless his home has been adapted to suit his medical needs.
Lynn told the Irish Mirror yesterday: “If he does stay in hospital, I can honestly see him coming home in a coffin.
“Whereas if he came home within six months, or hopefully before that, he could live for a few years, he would have a chance for normality.”
The distraught expectant mum explained: “We spoke to a professor in respirology and he said David could die in months if he doesn’t come home, because of all the different patients and infections and bugs.
“If he came home, he would have five, maybe 10 years.
“The hospital and nurses have done all they could do for him at this stage, they are waiting to discharge David.
“But we can’t take him home, we’re not allowed to until we have made changes to the house and we have the right equipment to look after him.”
David was a keen rugby player and had no serious health concerns until 2002, when he had three strokes and a brain hemorrhage during a trip away.
He was flown back to Beaumont Hospital where doctors discovered an unusual cluster of cells in his brain on his MRI scan.
Lynn recalled: “They found a cavernoma on his brain stem – it’s like a raspberry of cells that keeps filling up with blood and blocks off the signals from the brain to the body.
“They operated on him and removed 97% of it which left David wheelchair-bound.”
David remained at Beaumont and later the National Rehabilitation Hospital in Dun Laoghaire for almost two years learning how to adjust to his condition.
He came home in 2004 after his family had made the house fully wheelchair-accessible.
Although he was no longer mobile, brave David still got on with life and even managed to find love with care assistant Bernadette Dolan.
His sister revealed: “Bernie met David when he was in a wheelchair. They were on a night out. It was about seven years ago.
“She’s an absolute gem, she’s stuck by him, she doesn’t care, no matter what way things turn out, she loves him for him.
“They got engaged in June 2012 in France.
“They’d driven over by campervan. We were all so happy.
“They were setting up home in Navan, making it accessible for David, when everything started to fall apart.”
In autumn 2012, David’s condition worsened as the cavernoma on his brain grew again. He began losing his speech and he underwent three operations to insert a shunt on his brain that would help drain fluid.
Lynn said: “Unfortunately, it didn’t actually work.
“We thought it had for a while because David was starting to get energy back but on Christmas Eve 2012, the doctor told us David was going to die in three days.
“He got weaker and weaker and then on the third day, he bounced back.
“He was sitting up in bed, talking like a normal patient.
“David is a fighter, he always was. So the surgeons saw this and they decided to remove the entire cavernoma form his brain stem.
“They did this and he was put into the intensive care unit where he stopped breathing.
“He became fully ventilator dependent and that’s when doctors realised he had no movement.
“He can’t talk, he can’t move, he can’t swallow, he can’t do anything, he can only communicate with his eyes, up for yes, down for no.”
Since being diagnosed with the locked-in syndrome, David’s family have taken over most of his nursing care.
His dad Philip, 61, and 30-year-old Lynn usually arrive at 10am each day, while his mum Rose, 62 takes over the duties in the afternoon until 8pm to 10pm.
David’s younger brother Gerard, 32, comes over every other day, while fiancee Bernie also visits all day when she is not working.
His family have applied for a HSE homecare funding package so they can bring him home, as recommended by doctors.
But they claim they were told on Wednesday they would not be getting any funding.
Lynn claims the cost of keeping David in hospital is around €1,700 to €1,900 per day or €620,500 to €693,000 per year.
She said: “A homecare package would be worth maybe €400,000 in total to cover two ventilators, in case one backs up, a generator, a hospital bed – things they only need to invest in once – and nursing care.”
“It’s cheaper and safer than keeping him in hospital so we don’t understand why funding has been denied. It’s unreal.
“He’s 33 years old and he’s going to be permanently in hospital.
“David has written letters to the HSE.
It takes a week to spell out each letter, we hold up an alphabet and say A, B, C, to him and he looks up to tells up which letter he wants. And all he ever says is, ‘When can I come home?’.
” This is really getting him depressed.”
Source: Irish Daily Mirror
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