Jesy Nelson

It's like...

Every day is different, but you just... Yeah, but you know what, Jessie?

Yeah.

I mean, it doesn't feel like it when I'm in that moment, but I mean, that's lovely.

Yeah.

there's a hill prick test that you've mentioned yes that can test for sma yeah so it's not in this country so it's like 45 countries where they do test for it and this is one of the countries that don't um i think it's just um it's now just been made part of the hill prick test in scotland they're saying that it's going to take up to six years potentially for it to be

in the Hillbrick test here, which is like just mad because it's like all these babies that are going to suffer and all these families that are going to suffer and they don't have to.

So the test will tell you whether they have SMA and what type, how severe it is.

And then once they've got that diagnosis, it's then about getting treatment as soon as possible.

When I tell you, this treatment is life-changing.

I feel like I need to show you, because sometimes I can verbally say it, but until you see it, it's like you don't actually understand the severity.

It's literally the case of either your child will be in a wheelchair or your child will walk if you get the treatment early enough.

And it's just like...

When you go to Great Ormond Street, there's a whole corridor of like families on the wall and all their different diagnosis and what they've been through.

And there's two girls of SMA type one.

One of the sisters is in a wheelchair because obviously the parents didn't know.

And then, you know,

unfortunately didn't get her treatment in time to be able to save her legs.

And then there's the sister.

When they went on to have another child, they knew what they were going to be dealing with.