Jesy Nelson

Look at this little position that they're laying on me in.

And then when I took them home, when I'd lay them down to change their nappy, their bellies were like a bell shape.

So SMA babies, their ribs will go in.

And their bellies come out like this.

And they breathe from their belly.

They won't breathe from their chest.

And I just remember saying to my mum, like, oh, they've got unusual little shaped bellies.

And she was like, I know, it's because they're premature.

And I just saw all of the signs, but I just had no idea.

Because I was constantly told, don't convey your baby.

So I just thought that was normal.

And then...

Me and Zion decided we wanted to move to Cornwall because we just wanted our babies to just... We felt like they'd been through all this trauma and we just wanted them to grow up in a peaceful setting and just be around the sea and just live like a kid.

So we went to Cornwall and I didn't... I honestly was not even taking notice of their legs because they were like...

you know they're my first set of children so I don't know how they should be moving their legs or what they should and shouldn't be doing anyway but they would it was like kind of their feet would move just like this but there was no like you know like most babies would kick their legs quite frantically but theirs were just like this and you know because we'd moved six hours away now my mum wasn't with me every day so she I think

noticed how much it deteriorated.

And she was looking at them in their little rockers and she said, Jessie, they don't move their legs very much.

Have you noticed that?

And I was like,

Really?