A father of a critically ill boy in Ireland has written an open letter to raise awareness of the struggle families are going through because of flaws in the Irish Health Service.
Declan Coyle’s son Alex suffers with Mowat Wilson Syndrome, a rare condition that affects a victim’s physical and mental health.
Alex is now 10 years old and requires 24 hour care. His father has written an open letter, taking the format of Martin Luther King’s iconic 1963 ‘I Have a Dream’ speech, in which he campaigned for racial equality in America.
Mr Coyle spells out the reality for parents caring for critically ill children, and the lack of financial and practical support they currently receive from the health service.
Here is an extract from My Coyle’s letter:
“I too have a dream. I have a dream that one day we show the nations of the earth how strong we are by the way we look after, care for and cherish our weakest and most vulnerable both young and old.
“I have a dream that Charlotte’s family and our family and thousands of other families with special needs children won’t have to spend time that should be spent loving and caring for our children writing letters to ministers for health and to the newspapers and going on television to simply get our children’s Medical Cards back.
“I have a dream that someone government minister will go on radio or television and thank the families of special needs children for saving the State hundreds of millions of euros by caring for their children at home.
“I have a dream that when they pull your card they will tell you exactly how many more thousands you must find each year to pay for the medications.
“I have a dream that no more impersonal letters come through the door telling you your card is axed and that you are on your own.
“I have a dream that when Dr Rita Doyle says to the HSE that this child has Mowat Wilson Syndrome and needs a card for life that they will listen to her and respond.
“I have a dream that no other families will go through what we’ve been through.
“I have a dream that it won’t take 10 months of grinding, humiliating evaluation before a card is given or axed.
“I have a dream that Alexander and other children like him will be recognised as an individual in his or their own right. Not a non-person until he’s 16. As the UN asked us to do.
“I have a dream that the HSE forms will have a place for petrol for journeys to Crumlin Hospital, for the money that goes into the black money pit of the Crumlin car park (8 solid months of hospital visits over two years), for the electricity for non-stop washing of soiled sheets, duvets and trousers, for TV monitors in his bedroom to get up to him during the night, for his special shoes (€400), for his car seat, for his buggy, for a stair lift, for repairs to his orthopaedic bed, for ramps outside the house, for a special bathroom and that’s not the half of it.
“I have a dream that the minister and one other person from the HSE will spend one night on the floor by a hospital bed in Crumlin. Just one night. Just one night. Not four months in one year.
“I have a dream that no family with special needs sick children will live in fear and dread.
“I have a dream that no mother will write to me like the one last week who said, “My child has a heart condition and is severely sick with special needs. They pulled her card last week. I’m too tired and exhausted caring for my child 24/7 to take on the HSE. Please fight them for me. Please fight them for me. Please don’t give up like I did. I’ve lost hope.
“I have a dream that in this country no 93 year old man will sit on the couch here opposite me in tears saying, “I’m 93 years old. I’m taking 18 medications a day. I’m terrified that they’ll pull my Medical Card.” “Not at all,” I said. “You’re 93 for crying out loud. They can’t do that!” He replied, his voice breaking, “If they could do it to Alexander, probable the most deserving child in the country, they’ll do it to me. If this is what they do to the green wood, what will they do to the dry?”
“I have a dream that someday we will find love again, and that we will love again beginning with the weakest and the most vulnerable.
“I have a dream that the world will be different because we were important in the life of a child … or an older person … or any other human being.”
Mr Coyle’s moving letter does much to highlight the daily grind millions of families are suffering all over the world.
The purpose is to raise the public’s awareness, and to pressure the Health Service into taking action, with changes to make practical and financial help more readily available for those who need it.