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Declan Coyle via Twitter

Dad of boy with rare disease pens moving 'I have a dream' speech

Alex Kinne Coyle has a rare disease and needs constant care – but his medical card was revoked this year.

THE FATHER OF Alex Kinne Coyle, a young boy with a rare disease who had his medical card taken from him, has penned his own ‘I have a dream’ speech.

Alex (10) has the disease Mowat Wilson Syndrome, and has a profound intellectual and physical disability.

He requires constant care and his family recently went public with his story in order to raise awareness of his situation.

Now, as part of his campaign to raise awareness of the family’s situation, his father Declan has written an ‘I have a dream’ speech, inspired by Martin Luther King’s famous speech.

Here is an excerpt from what Coyle had to say:

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 some one 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 you 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 some day 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.

Read: ‘Why was the medical card taken from our son who has a rare disease?’>

Read: Pharmacists accuse government of lying on medical card withdrawals>

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