Maria Delaney

It was a rare disease as well.

And the impact personally and like even physically and emotionally on that on me and my family was immense.

And like I just felt I feel so sorry and heartbroken when I

Again and again, I talk to people, I interview people on this and they have to put their lives out there.

They have to detail personal experiences that they don't want everyone to know.

And the impact of that, like long term, is really heartbreaking and that the government keeps having people to...

Yeah, because...

This was back when I was in my early 20s.

So when I heard Elaine speak about Oisín because her son is 26 now and I think he was in college or like kind of trying to live his life, trying to get on with things, not have to think about his condition, I'm sure.

Obviously, it's part of him.

But like the last thing you want to do is have this broadcast and have it like have news like, say, in December when the MPs,

rejected the or said that it wasn't any value for money they actually said there's no price at which it can be cost effective which i was quite surprised about um because of the well what cost on a life that's that's true yeah no it's not a life-saving drug no yeah no i listen clearly to your interview but it can make a big difference to a person's quality of life and that's the

I think that's it.

Like, say, whenever I was a patient advocate, I actually purposely changed my name when I was married and stuff because I wanted to move away from that and not have that on me as a journalist.

That sounds very strange.

No, I can understand that.

But I didn't want to be completely labelled with that condition and be like, oh, that's who you are.

And that's why, like, I suppose in my head, I was like, oh, that's why people are asking me to, like, say, go on the radio or things like that.

So I've never really talked about it.

But I think you have all these things and the emotional toil then every time rejection comes from the government or funding comes, like your whole week is kind of distraught.