Stephen Lannen

So Nellie has SMA type 1.

She's about 11 years old.

Nellie was born just around the time when the drug was becoming available that they could treat it with.

But she wasn't able to get on a trial for it.

So she ended up getting the drug through here and there.

She ended up getting the drug at about 18 months old.

So she'd already had a lot of infections and she'd already become...

quite weak, I would say.

So as a result, she lost her swallow and she lost a lot of movement.

She lost her ability to cough and walk, sit up, hold her head.

So she lost a lot in that 18 months.

But the difference if she had had a heel prick test and then got the drug, because when she was a baby, a very small baby, she was kicking her legs up in the air.

She was quite strong.

We didn't know she had anything until about six months.

So if you're talking about giving her the drug before she loses all that movement, before she loses her swallow, so she can't swallow, which is a huge burden.

So if she got that heel prick test and then she got on a drug early, you know, I don't know where she would be now, but just the difference in terms of care requirement and quality of life for her would be just massive, you know.

I suppose with Nellie, it's just we are where we are.

We're lucky to have her.

And, you know, we've had plenty of tough days in the intensive care in Temple Street where we're very well looked after.

We're very well helped by the HSE with Nellie's care.