Claire Byrne

Joining me to tell me more is co-founder of SMA Ireland, Jonathan O'Grady.

It's just such a rollercoaster.

And I'm also joined by Stephen Lannan, whose daughter Nellie was born with SMA1.

I loved it.

That's such a huge compliment.

It's quite different for you, is it?

And you're both welcome to the programme.

Jonathan, I might start

with you here on this one.

This is a long-fought campaign, but you surely welcome this news today.

hint to it all the same going through it yeah I mean it was the insights around child stardom I found fascinating it was a real sort of lifting of the veil and that one line that stuck with me that runs throughout if the parents are relying on the child to pay the mortgage this is not going to end well

Now, when we say SMA, we're talking about spinal muscular atrophy, aren't we?

Explain to us what that is.

And your experience of SMA, you live a full life, don't you?

And your parents were told that, you know, don't put your child on the stage.

Is that where this idea began or was it sitting there in your mind?

Okay, and the treatment needs to happen immediately.

It's pretty much from birth, isn't it?

Yeah, and Chelsea, one of the twins, who's...

Yeah.