Jesy Nelson

So they got her treatment early enough and she walks.

She does gymnastics.

And you wouldn't even know she has SMA.

And that's the difference.

But the part that just really, like,

breaks my heart is that it costs so much more than what the NHS are going to have to find out for all the stuff, the equipment, everything that then the child then has to have because they haven't had this treatment.

Honestly, if I showed you the hallway of my house, every week, every two weeks, I get sent all their medical stuff that they need because the stuff I have to do on them every day is just... Yeah, it's like... And it's just like, who...

Who gets to decide whether your child will walk or not?

If they've just found out?

Oh God, I don't even know.

I'm still figuring it out myself.

Just to take all the only bit of advice that I have, if you've just found out, is to just take each day as it comes.

That's all you can do.

And it's, you know, changed my life forever.

But I am just still so grateful.

to you know the fact that they had their treatment and they're still here because it's just so sad that there's been so many families that didn't get treatment and their children died and it's just that shouldn't be happening in this day and age when there is treatment that really fucking works and changes their life so dramatically and it fucks me off that it took for me

with a platform for it to be taken seriously.

These poor families have been fighting for years and years and years to get this changed and just been ignored.

And then when I come along, because I have a few million followers, now you're going to take it seriously.

It's like, that shouldn't be the case.