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Chapter 1: What is the main topic discussed in this episode?
The Clare Byrne Show on Newstalk. With Aviva Insurance. Now my next guest lost a son last year to Friedrich's Ataxia and doesn't want to lose a second. 13-year-old Rory Cody died last September and 16-year-old Pawdy, who begins his junior cert today, has Friedrich's Ataxia too. Pawdy's dad, Craig, wants action on access to new medicines and Craig Cody is with me now. Good morning, Craig.
Good morning, Clare. Thanks for having me on here. Not at all.
Chapter 2: What personal tragedy motivates Craig Coady's plea?
I'm very glad to talk to you. I think a lot of people will have seen that video of you speaking at the Fianna Fáil Parliamentary Party meeting last week, which really struck a chord with people. I mean, we might be familiar with Friedrich's ataxia. It is a devastating disease and it is tearing the heart out of your family.
Yes, Clare. I pretty much sold my soul to the ministers and to the CDs.
Chapter 3: How does Friedrich's Ataxia affect Craig's family?
and Senators in Leinster House last Wednesday evening. It wasn't easy to, you know, talk about my situation at home with my family, with Dubai's mum. Again, she is a different rare disease, Huntington's disease. This is Della. That's Della, correct, yeah. She's getting full-time care now in Dublin in a Huntington's, they specialise with Huntington's in a hospital.
She was diagnosed five years ago. And two years later, my eldest was playing in a soccer match and I just noticed he was off balance. He just wasn't walking right, running right, trying to hold himself up.
Chapter 4: What actions is Craig taking to advocate for new medicines?
So I brought him to the GP and the GP noticed it as well. So we went to the CUH in Cork and the neurologist said, noticed that when he closed his eyes and stood up straight that he was falling. So the bloods, they sent the bloods over to the UK and unfortunately came back that he had Fidrix Ataxia. And then a year later, that with Rory, um, he wasn't showing any off balance, nothing like that.
Um, it was, uh, Dara Finn, the cardiac, uh, um, in COH just said, look, just bring up Rory. We'll check him. Um, and they checked his heart and unfortunately he's lower left muscle and the heart was thickened. Um, but he wasn't showing any signs of, um, off balance or anything like that. It was, um,
The Saturday, the 20th of September, he had a match for Bodavent against Greenwood in a cup game in Cork. And he had a great game. Just a normal day. Went to the shop after to get him a couple of treats. Went home. And he had his favorite fish and chips. We watched the match together. Played with his friends on the PlayStation. Went to bed with his headphones on because he loves music. And
Next morning, I noticed Paddy was up. No sign of Rory. And that's when I went into his room and I heard the music on, so I said, oh, he must be listening to music. But I said, I'd better get him out of bed. Unfortunately, he was no longer with us. He had a severe heart attack in the middle of the night to do with the lower left muscle thickened in his heart to do with Frederick's ataxia.
And that was only last September.
Last 21st, yeah, it was Sunday morning.
But now since then, you've noticed, have you, that Paddy's condition is deteriorating now, is it, Craig?
Yes. Look, I'm still in bits with Rory. I'm still grieving very much. And it was the Borderburn Secondary School, SNA, who phoned me one day to say that, look, Paddy is fatigued, very tired. He asked, could he have a rest? But this is part of Frederick's ataxia. um, something new again. Um, so they brought him into, cause it's, it's, it's new school. They have a relaxation room.
They brought him in there and he fell asleep. So I felt I need to do something. Um, that's when I went on here, um, in the Neil Prendergast show, um, back about, I think it was two months ago. And, um, I just felt I need to do something here because the, um, back in, uh, In December, the NCPE declined.
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Chapter 5: What challenges does Craig face in accessing treatment for Paudie?
Thanks for talking to us, Craig.
Thanks, Clare. Thank you. Bye-bye.
The Clare Byrne Show.
With Aviva Insurance.
Weekday mornings at 9. On Newstalk. Conversation that counts.
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