Jonathan O'Grady

So your muscles gradually stop working.

I'd like to think so.

Yeah, I've been very lucky.

Despite my SMA, I went to college and I've worked all over the world and I've lived in Ireland now for the past 20 years.

And yeah, I'm, you know, I think I'm just a typical example of many people out there

with SMA.

There are about 70 people in Ireland right now living with SMA.

And despite not being able to walk, currently I'm not strong enough to use my arms.

With the love of my family, support that I receive from people like the Irish Wheelchair Association,

and a number of other bodies, together with maybe some inner strength, one can lead a very full life.

And I think most people with SMA surprise their parents and go on to do amazing things.

You know, that's what's so important about having SMA included in the Hillprick test is that now a child born with SMA will receive treatment really early, which means those motor neurons hopefully won't die as quickly and those children will physically be in a much better state.

Well, unfortunately, a lot of children up till now who've got SMA mightn't be diagnosed until they're 18 months or even older.

But this is the difference, isn't it?

And by that time, damage has been done.

Yeah, this is the difference.

And now they'll be diagnosed in three days.

In three days and treated in weeks.

It does.

The drug was approved.