Deshocks

‘If there’s a price tag on every child in this country, it’s a sorry country’: Craig Coady’s fight to save his son

16 year old Paudie Coady has Friedrich’s Ataxia, a rare, degenerative neurological condition. Last year, the same condition claimed the life of his younger brother Rory.

The boys’ mother, Della, has advanced Huntington’s disease.

As reported by Louise Burne last week, their dad Craig is in a race against time. Yesterday, he met Taoiseach Micheál Martin as part of his campaign for the HSE to introduce the drug Skyclarys in Ireland.

Skyclarys would slow down the progression of Paudie’s illness and give him a better quality of life.

Joining me on today’s episode, Craig said the system for approving new drugs in Ireland is not working.

“Look at the silly money the HSE are spending on mistakes in hospitals. You know, you have someone up there that’s going around high fiving, yeah, I saved €500,000 here, I saved €1.2 million here, I saved this here, but yeah, how many lives have you saved?

“If there’s a price tag on every child in this country, well, it’s a sorry country,” he said.

“Do you want to go to bed every night thinking, God, I hope my child doesn’t really get sick because there’s no hope?

After meeting Taoiseach Micheál Martin – whom he describes as “a family man”, who was emotional during their meeting – Craig is hopeful that there will be progress on Skyclarys.

“He had a representative down from Dublin, a HSE / Department of Health representative, and he said it is on the agenda for July... He said that they were trying to push that meeting forward and he was hoping that it would happen.

“He understands that Friedrich’s Ataxia doesn’t wait.”

On today’s episode Craig told me about his meeting with Taoiseach Micheál Martin, losing Rory, and the tragedy of his wife Della’s Huntington’s Disease.

You can listen to this episode by searching for The Deirdre O’Shaughnessy Podcast wherever you get your podcasts - or check out the Irish Examiner website.

Photos by Chani Anderson

https://podcasts.apple.com/ie/podcast/the-deirdre-oshaughnessy-podcast/id1551708498?i=1000771903897

Sounds good to me…

I was reminded of this text this morning and said I'd share it with you. It was written by Giraldus Cambrensis, aka Gerry Barry - a Cambro-Norman who came over to Wexford/Waterford in the late 12th century after the arrival of his fellow Normans.

To be fair, he didn't think that much of us, but I'd say he was accurate enough in parts. One great observation was how we didn't have to much of a grá for the money making of towns but instead, valued our liberty moreso and were incredible musicians. I am sure many of you will agree - that this is still the case and I know I can spot some of the old traits in my dna too. Great reading here.
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"The Irish are a rude people, subsisting on the produce of their cattle only, and living themselves like beasts - a people that has not yet departed from the primitive habits of pastoral life.

In the common course of things, mankind progresses from the forest to the field, from the field to the town, and to the social condition of citizens; but this nation, holding agricultural labour in contempt, and little coveting the wealth of towns, as well as being exceedingly averse to civil institutions — lead the same life their fathers did in the woods and open pastures, neither willing to abandon their old habits or learn anything new.

They neither employ themselves in the manufacture of flax or wool, or in any kind of trade or mechanical art; but abandoning themselves to idleness, and immersed in sloth, their greatest delight is to be exempt from toil, their richest possession the enjoyment of liberty.

The only thing to which I find that this people apply a commendable industry is playing upon musical instruments, in which they are incomparably more skillful than any other nation I have ever seen. For their modulation on these instruments, unlike that of the Britons to which I am accustomed, is not slow and
harsh, but lively and rapid, while the harmony is both sweet and gay."
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Text: Michael Fortune
Text/Image: Giraldus Cambrensis from The Topography of Ireland, c. 1188.

Trafficked as a baby and adopted from Bessborough, former Lady Mayoress Ursula Shannon fought for all the forgotten babies — we cannot allow them to be concreted over, writes Kate Durrant in today’s Irish Examiner

To read the full article click the link in comments