Jesy Nelson: Life After Little Mix

Hey, love. You've been in the sea. Where have you been, little Moon?

Have you been in the sea, Mr Moon?

This is… This is, like, the real luxury of Cornwall.

Of Cornwall. Yeah, hundred per cent.

-Like, the sun's out. - I know.

-The girls are content. - Yeah, literally.

We're sitting on the beach.

Well, I'm just looking forward to, like…

Obviously it's lovely the age they're at now,

but, like, when I see little kids running on the beach

and, like, going in the sea, it makes me really excited.

All right, baby.

-'Cause that's gonna be their memories. - Yeah, I know.

You know what I mean, growing up.

Even just the fact that when they start walking,

-they can walk on the sand. -Yeah.

-They can learn how to walk on the sand. -True.

- That's so lovely. -So, so lovely.

Say, "Good morning, Nanny."

Because we'd had such an awful experience in terms of the whole pregnancy.

It was a bubble

because I felt like I'd got there and we were like, we've done it,

like, we've actually done it. We're here.

And so now it's gonna get better.

We're having a lovely old time in our new place, aren't we?

Yes, an absolutely delightful, peaceful time.

Ocean…

Jes here.

Story's down over there.

Ocie-Bear!

Are you chilling with Daddy?

But obviously, I feel like that all came crashing down.

-Yeah. -

Can't believe this is happening.

I feel like I'm gonna feel heartbroken for the rest of my life.

Something good has to come out of this.

I just refuse to let anyone go through this again.

The last time everyone's seen you is in Cornwall.

Yeah.

I was actually really enjoying life by the sea.

And then we…

It's really difficult to explain

because where the girls were premature babies, we were told,

don't compare your baby to other babies because they're never gonna be the same

because they're so behind.

It was actually Mum.

They were in their bouncers.

And Mum was just like, "Have you noticed that they just don't move their legs?"

Number two, coming in.

There you go…

We're looking up, like, how to get premature babies' legs moving.

It was, like, take them swimming, put them in the bath.

So we put them in the bath and then we would really, like, try to move them,

but we'd noticed it was just the water making them move,

not necessarily them moving their legs.

Is that nice?

And then I just was like, "This isn't normal.

Like, we need to go see someone because there's no movement."

And then we were like, "Let's watch back videos, cause then we'll know."

We noticed from the minute that we took them home, actually,

that they were really kicking their legs, and we were like, "What is going on?"

We just didn't understand it.

But we had to wait a while for the paediatrician appointments because

I think the closest private paediatrician we could find was a, um… was in Bristol.

So we were just like, do you know what… I think we both started panicking.

Like, let's just go back to London.

And when we got the paediatrician appointment,

he just was like, "If I'm being honest with you,

it's like they're paralysed from the waist down."

And I… At that point, I literally just burst into tears, and I was just,

you know when you just, I felt like I was having an out-of-body experience.

I know they tell you never to Google, but I was never not gonna Google.

If they're floppy, they can't lift their head,

they're struggling to swallow, struggling to take their feeds…

- Tummy breathing. - Yeah.

If they breathe from their belly.

First thing that came up was SMA type 1.

Which is the most severe… …muscle disease a baby can have.

Spinal muscular atrophy, that's what it stands for,

and it is a muscle-wasting disease.

Over time, it affects all the muscles in the body.

And the first thing that comes up in Google

is the worst thing you could hear as a parent.

If you don't get treatment, your babies will not live past two.

And I just remember ringing Mum, and I just literally was like,

I literally can't believe this is happening, and I was just sobbing.

We've been in all weekend. Took the blood test today, Monday,

which Great Ormond Street requested get sent off

and then they said they want to examine the babies themselves.

There is still a possibility that these blood tests might come back

and it might not even be SMA type 1.

You've been amazing, really. You two have been amazing.

Thank you.

We've all been amazing.

We're just trying to keep each other up,

-and that's all you can do. - That's literally all you can do.

Time is literally now of the essence, because if this is what it is,

it's literally a matter of life or death.

Come on, come on.

You got her. Yeah?

I had a day where I got back to hospital and I just wanted to literally,

you know when you just wanna go…

…and just scream and cry, and obviously I couldn't.

So then I went out into the foyer bit where there was no one there,

and I just, like, sobbed because I just was like,

I can't… I literally can't deal with this,

but just being home feels… already feels ten times better.

Hi. Hello, darlings.

Hi.

Aw, bubbas. Is… coming to see you?

So, now we're having a video call, which we will get the results.

Hi, can you hear me?

-Yeah, we can hear you. -Yeah, hello.

- Okay, nice to see you again. - And you.

When we met on Wednesday,

um, it was… we discussed quite clearly that both Ocean and Story

had very obvious signs of the condition that we were suspecting…

-Mm-hmm. -…because of the weakness that we saw,

because of the difficulties in swallowing and in breathing.

Um…

So, um…

So the genetic testing came back for both of them

positive for spinal muscular atrophy.

So we basically now have the confirmation

that they are both affected by this disease.

So now we need to act quite quickly

because we have already, somehow, wasted a lot of time

because, unfortunately, SMA in the UK

is still not part of the newborn screening, the national programme.

You know, the heel prick that they did when they were born.

- Mmm. - Yeah.

They were tested for some metabolic condition or treatable condition.

So if they were tested for SMA at birth, they could have been treated earlier,

but this is still not in place in this country.

-Hi. Hi, hi, hi. -

Sorry.

No, it's fine.

It's all right. She just needs a cuddle.

Who is, uh, demanding attention?

-Ocean. - Who of the two?

- Ocean. - Ocean? Yeah, of course.

If you have just received, you know, the diagnosis and feel lost…

- Mm-hmm. - …you need to digest all of this,

but it will be good if you want to connect with the SMA UK,

we can hand over, you know, their contact.

How do you feel about that?

No, we definitely want to. That would be really helpful.

- Perfect. -Okay, thank you so much.

Bye-bye.

I know I sound very negative right now, but I'm, like…

I don't know, I just… It's just really hard to, like, accept that

this is gonna be their life now.

It just feels like it's getting worse and worse and worse

with the information we're being told.

It's just so hard, honestly.

I feel like… I really thought my hard days were over,

and I'm just like, I can't believe this is happening.

And I feel like me and Zion have really tried to be, like, positive and strong,

but, like, I just feel like every day when we get told more information,

I just honestly feel like, I don't know, I just feel heartbroken,

and I feel like I'm gonna feel heartbroken for the rest of my life.

I'm not equipped to deal with this.

I'm out of my depths. Emotionally, physically, mentally.

So, at the moment I'm just trying to… I'm surviving.

- Yeah, that's what it feels like. -And I think I just need to get help.

I think we're both like, I don't know how the fuck we're gonna do this.

And we will because we have to.

We don't have a choice, but it's really fucking hard.

-Yes. - Yes, bubbas.

It's so hard when they're just so happy and smiling.

I feel really, like, shit to be sitting here crying.

I'm like, I don't… I shouldn't be doing that, but…

They are literally the bravest little girls I've ever known

to go through all of that and still be smiling, it's just like…

I just… I'm just, like, in awe of them, honestly.

Like, I've never, ever known two stronger little girls than them.

Oh, yeah.

It's so much to even have to come to terms with this diagnosis,

but then on top of that, you get bombarded with hospital appointments.

Today gives us more of an indication

about how their feeding's gonna look like moving forward in the future.

They basically X-ray their throat and, like, every second it takes 30 images.

It… Yeah, it just assesses how they feed.

- Hello, guys. - Nurses and doctors

and people coming in telling you something that your child's gonna now need.

-Hello. - Hi, there.

You just received a referral,

-it was from physio… - Yes.

…just to have a look to get some splints, just to help.

Getting some tightness in the legs,

-is that right? - Yes.

SMA affects all the muscles in the body.

It affects the swallowing, the breathing, the heart, everything.

And that's just really scary.

So this is the model, this is what we work off.

-This is her neck and her head up here… - Right.

…and then her legs is down here.

-And then this is her belly… -Yeah.

…and then her lungs and her ribs.

Your brain is just like…