Claire Byrne

So maybe the time is now to go and have it checked out.

Eleanor, thank you very much for all of that advice.

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.

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.

And that was only last September.

But now since then, you've noticed, have you, that Paddy's condition is deteriorating now, is it, Craig?

So just to explain to you, this is the National Centre for Pharmaco-Economics.

We have discussed this topic on the programme very recently with a young woman who you might know called Emily Felix, who has been campaigning on this.

And she's an incredible woman.

You know, she's been to college.

She's facing huge challenges.

She's working.