'Please let me go home. Let me plan my wedding. Let me have happiness'
The family of David Garvey tell Alan O'Keeffe of their heartbreaking battle to give him a more 'normal life'
Published 20/03/2014 | 11:21
A PARALYSED man is pleading to be released from hospital so he can be nursed at home.
David Garvey (33) suffers from 'locked in' syndrome and is incapable of any movement and can only communicate by moving his eyes.
In a poignant letter to the HSE, which took him a week to write, he has begged the service to allow him to have something of a "normal life" and return home. All requests have been rejected by the HSE to date.
Using eye movements only, he dictated the letter with the help of a family member holding an alphabet chart.
His family travel from their home in Dundalk each day to visit him, and his fiancee Bernadette Dolan uses every day off to visit him.
Communication for David is by the eyes alone. When he raises his eyes upwards it means 'Yes' and looking down means 'No'.
In a heartbreaking series of letters to the HSE, he has pleaded to be allowed to be nursed at his family's home in Dundalk.
He said: "Can you please close your eyes and imagine lying in bed not being able to move a muscle and being hooked up to a life support machine.
"Imagine when you open your eyes the first thing you see is a ceiling, you will see that same ceiling for the next few hours until a nurse moves your head.
"Your next view is a wall with a mirror and sink. Believe me, this will be the highlight of your day until your family comes to visit. It is so hard being away from my family and friends for so long I feel I am almost invisible now."
An HSE spokeswoman said "all possible options" for his care are being explored with his family.
"Clinical considerations" and "care costs" were outlined to the family and direct discussions with the family remain available at all times, she said.
David was an able-bodied young bookshop sales assistant aged 22 when he suddenly collapsed while on holiday in Paris.
A cluster of abnormal blood cells on his brain stem, called a cabernoma, caused the collapse and resulted in three strokes and a brain haemorrhage. It left him confined to a wheelchair.
He had surgery at Beaumont Hospital which removed 97pc of the cabernoma.
Following this, he undertook studies in Dundalk and earned a Master of Arts degree by rising at 5.30 each morning to travel daily by train to Trinity College, Dublin, in his final year of studies.
He began a relationship with his girlfriend Bernadette Dolan in 2007.
In 2010, he wrote a novel, not yet published, based on the Dracula story. In October of that year, while celebrating his 30th birthday at home, he suffered two blackouts.
In 2012, David and Bernie became engaged and set a date for their wedding for September 2015, booking a hotel for 100 wedding guests.
But his health began to deteriorate and in May 2012 tests showed the cabernoma had grown back onto his brain stem. He underwent three operations involving a shunt.
His sister Lynn said: "On Christmas Eve, 2012, we were told David might only have three days left to live.
"But he bounced back the next day and had an operation on New Year's Eve which removed the cabernoma but he was left paralysed.
"Last March, we were told he had 'locked in' syndrome which means he is completely paralysed.
"He can't move, speak, or do anything whatsoever.
"We were told that the hospital can do nothing more to make him better so we keep asking for him to be nursed at home. We are begging the HSE to let us bring him home.
"Every day we leave him, it's heartbreaking. He cries when we leave."
Initially, the family believed €200,000 annual funding was close to being approved for 24-hour home nursing. David was elated at the prospect.
But in January, the family were told the cost would be more than €400,000 and he would not be allowed home.
He and his family continued to seek home nursing but they received a firm refusal last week leaving David distraught.
"We are now begging the HSE to reconsider," said Lynn.
Fiancee Bernadette said that the family would stop at nothing to get him home.
"We just want him out. I will build an extension on my home for him. I love him to bits. He's always had a heart of gold," she said.
"Every day I have off I visit him. David's a fighter and I know if the same happened to me, he'd be at my bedside 24/7."