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"My girls are my whole heart and soul."
Sign Jesy's petition here: https://petition.parliament.uk/petitions/755980
Jesy Nelson opens up about her new Prime Video documentary 'Life After Little Mix', delving into the birth of her baby twin girls, and her struggle after their devastating Spinal Muscular Atrophy diagnosis.
Jesy is currently petitioning the UK Government for urgent change to UK Health Policy, advocating for free and mandatory screenings for SMA to all babies borb in the UK.
#JesyNelson #LittleMix #LifeAfterLittleMix
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0:00
I mean, literally, as I am contracting, people are setting up camera
0:05
You're kidding me. In the room, as I'm about to be put to sleep to have my operation
0:11
So the big question, of course, is there life after Little Mix? Well, I can tell you that that's going to be answered tomorrow
0:18
because there is a brand new documentary that lands on Amazon Prime tomorrow
0:22
called Jessie Nelson, Life After Little Mix. And she joins us now live to tell us all about it
0:29
Oh, thank you for having me. Well done. It's been so long. It has. It has been so long
0:33
And I've been saying, I've been dying to see you just to put my arms around you and give you a hug
0:37
Give her a cuddle. Give her a, come on. Give her a, have a cuddle. We've had a lovely cuddle
0:42
We have had a lovely cuddle. I don't want to mess her up. She's so perfect. But yes, because..
0:48
I mean, what a year you've had. ...has been a rollercoaster. I know it's a cliche
0:53
but flipping heck, that is your life. You know, it's just like, I don't feel like you could even write it
0:58
No. No, you wouldn't believe it. If it was a film, they'd go, oh, I was so far-fetched
1:02
Two days into filming, I was rushed into hospital to have the laser surgery because of the twins' TTTS
1:10
What does TTS remind us? Twins' twin syndrome. Yeah. So it's like when they live off one placenta
1:17
and they don't get enough equal blood flow. And if you don't have that, there's like 95% that they'll die
1:22
Oh, gosh. So that was two days into filming. That was two days into filming. And then literally from the day I went in
1:28
I was not allowed to leave the hospital. So then I ended up living in hospital for next to nearly three months
1:33
So what did they film? Is that all in the film? Well, we..
1:38
I had to set up cameras in the hospital. No. Yeah. So you had to do the op
1:42
like the technical... So, I mean, literally, as I am contracting, people are setting up cameras
1:50
You're kidding me. In the room, as I'm about to be put to sleep
1:54
to have my operation. To be honest, I was so focused on them
1:58
and it was in such a state of shock that they were coming that to be honest that just all got
2:02
phased out to me but now when I watch it back I'm like
2:06
it's mad it is mad but it's I mean you've got so many fans
2:12
and so many people that love you and wish you well so everyone's going to be rooting for you I think it's going to do really well
2:16
but also it's going to bring a lot of awareness and you've always been an extraordinarily
2:21
truthful honest person that wears their heart on their sleeve and so that's what we can expect from this entire thing, isn't it, really
2:30
I mean, if that's how it starts. There's nothing they didn't film
2:34
Really? I mean, the access is pretty crazy. What's it been like watching it back then
2:38
Has it been quite difficult for you? Hard, really hard. Because obviously at that time, I never knew about their diagnosis
2:44
No. So when I got out of hospital eventually, because they were also on the neonatal ward for over a month
2:52
so then when I come out, I was like, oh my God, we're out of the trenches. So you thought that was it
2:57
And I thought that was it. You were in the clear. And I was like, now we can live our best life. And then what happened
3:01
I moved to Cornwall, wanted to give them the best upbringing possible
3:04
Just wanted them to live like kids and just live a peaceful, happy life. Cornwall brilliant My family are there My mum notices And she noticed it like that Noticed what Noticed their diagnosis the SMA But what their diagnosis SMA so she noticed that their legs weren moving and because she been with me every day
3:19
and then we'd moved to Cornwall so now she wasn't seeing me every day she spotted it very quickly
3:25
whereas I didn't because I was constantly told from when I was in NICU
3:29
don't compare your babies to full term babies just never compare them because they're not going to reach the same milestones
3:34
they're going to be slightly behind slightly delayed they're going to be delayed and also they are my first set of children
3:39
so I actually didn't know what I'm supposed to make it up for if anything all I'm doing was checking their temperature
3:46
are they breathing and have they had a poop today so yeah
3:51
and then obviously that happened and they've carried on filming because I just was like
3:57
you know something good has to come out of this and I'm trying to campaign at the moment
4:04
to obviously get the heel prick Yeah, so what we should say is spinal muscular atrophy
4:11
Oh my God, you say it. SMA. SMA. So what actually is it
4:14
When a baby's born, every baby has a heel prick, don't they? And that tests for a whole wealth of illnesses and conditions and things like that
4:23
But this one, for some unknown reason, is not included. Well, I know why, it's money
4:29
Well, yeah, it's not included, but it's something that is completely curable if it's picked up
4:33
Yeah, and that's the part that's like the most devastating part about it, is that if you catch it early enough and they get their diagnosis
4:40
it is the most life-changing treatment ever. Not only is it a matter of life or death
4:44
but it's also the fact that your child will either walk or they'll be in a wheelchair
4:49
Right. And that's the difference. And there's been lots of families that obviously
4:53
they've not got their, didn't know about the diagnosis, unfortunately didn't get the treatment in time for their children
5:00
so now one of their child might be in a wheelchair, but then because they now know about it
5:04
when they've gone on to have other children, they've given them the treatment early enough
5:08
and the difference in the children is unbelievable. Like, it's shocking. So, just you being here talking about it
5:15
is going to change people's lives? Well, absolutely. Just simply by shedding some light on it
5:20
Even since I made the video about the girl's diagnosis, I've had about six people message me being like
5:26
because of your video, I've seen these signs in my baby and I took them to the hospital and they've just been diagnosed with SMA
5:31
Oh, my gosh. Just so we're clear, because there will be people listening, there'll be mums and they'll be terrified
5:35
There'll be people just going into labour maybe. How is SMA diagnosed
5:42
So it's a muscle wasting disease. Right. So SMA babies are very floppy, so they can't hold themselves up
5:50
They don't have any neck strength. They've got very weak leg movement
5:55
Everything is just weak. Like how a... I don't know what the correct word is to say
6:01
but a baby without SMA can do a lot more. It's stronger
6:05
It has the bodily coordination. Yes, yes. So if someone's concerned about it
6:11
they should go and talk to their doctor. It's the floppiness that is the key thing to look out for
6:15
But also, you know, there's other signs. Their bellies are quite unusually shaped
6:19
They're like a bell shape, so they'll go in in their ribs and then they come out in their belly and they breathe from their belly They don breathe from their chest And these are all the signs that I noticed That you wouldn have noticed because you a new mum I did see them though That the problem
6:32
I did see them. From the minute I took them home, one of the first things I said to my mum
6:36
when I laid them down on their changing mat was, look how unusual their belly shape is and they're breathing from their belly
6:41
Oh my gosh. And we were like, well, it's because they're premature. Yeah, everything was against you
6:46
So what are the sort of daily challenges that people with SMA face
6:50
I mean yeah for me right now it's the medical stuff that I have to do on them
6:57
because overnight you have to become a nurse yeah and you don't have a choice
7:01
in that matter they I remember when I they were showing me
7:04
how to put a feeding tube down her nose into her chest to like get off secretions
7:09
oh darling and I remember crying being like I don't want to do this
7:13
because she was crying yeah and I'm like I feel like I'm hurting her
7:18
and she's like listen And I know this is horrible, but you don't have a choice. You've got to do it because no one else is going to do this
7:24
And you just have to suck it up and get on with it. And I know that's part of being a mum, but you just never expect that you're going to do this on your child
7:30
Do you know what I mean? So is that for me, I mean, listen, it's everything
7:35
but it is for me right now, the thing that I struggle with the most is doing the medical stuff on them
7:39
because it's every day. And that's the hardest part for you. And it will get easier, I would imagine
7:44
I would like to think so. And, you know, that's the thing with SMA. everything's so uncertain so they've had their treatment which is incredible and i'm super lucky
7:53
that they've been able to get that um but then it's like it's still 50 50 with you don't know
7:59
what's going to happen like how they're going to progress and it's all just you just got to take each day as it comes and any little bit of progress that they make is a win to me like my milestones
8:07
are so different now to to what they used to look like so like now if i can sit them on my knee and
8:12
she can balance her head for five seconds i'm like yes yes you know what i mean like that's that's my
8:17
a new milestone for me. Yeah. And I mean, talking about this
8:21
you're obviously raising a huge amount of awareness. How can we all help
8:25
to get the government to pay for it or add the test into the little heel prick
8:30
What can we do? Is there a petition? How can we help? So my petition is going to go live today
8:36
Brilliant. And we just need to get, at the first stage, it's 10,000 signatures
8:42
Oh, easy. And then once we do that, then it's the 100,000
8:46
Yeah. and then it's all up to them. Jessie Nelson, Life After Little Mix
8:50
is on Amazon Prime tomorrow. And the whole lot drops. How many are there
8:54
It's a binge series, six. Six, you could watch them all over the weekend. Well, it was Valentine's weekend as well
8:59
I know. It's just perfect. And the weather's terrible, which is perfect for telling
9:04
How do you think people are going to react to the show? How are your fans going to..
9:08
I'll be completely honest with you. I struggle to watch it, obviously
9:12
But I feel like you literally go on a rollercoaster of emotions
9:16
like one minute you're laughing then you're crying then you're like when I watch it
9:21
I can't believe it's my life yeah like but it's brilliant it's great
9:27
that it's been documented do you know what I mean I mean I don't know
9:31
what's happening in the future but if it goes again you just go oh my gosh this is you now this is your life and also it inspirational for people thank you so much because you are so strong I couldn wait to give you a cuddle and you upbeat and you there and I like oh it okay she alright we getting so many messages
9:46
in as well so many lovely messages oh my goodness Jessie's such a caring beautiful mum oh that's so sweet
9:51
Matt the window cleaner he always texts he said he's going to
9:56
get behind the petition the petition is live now it's all over our socials
10:01
at Mrs Heart and it's all over mine and it will be all over Jessie's I think it was supposed
10:05
to go tomorrow, but we've let the cat out of the bag. But we need as many of you to sign it as possible
10:10
Thank you. It's a good thing. Just tell you, what is life like for the twins now? I mean, today, for like a normal day
10:15
what does it look like? For instance, what's going to happen today? Your mum and sister. So my mum and my sister
10:19
will not have them today. So because they're so vulnerable where they've had their treatment
10:25
they're on like a course of, they're on a lot of medication right now. So they actually can't do a lot
10:29
So we have to be very careful. Like we can't take them to many places because they can't catch anything
10:34
Their immunity, yeah. so once they're off them hopefully we'll be on the up yeah
10:39
into them getting even stronger yeah but no they're doing really well
10:42
I'm so lucky in the sense that you know they got their treatment
10:47
because there's been so many people that didn't and that's the really sad part about it
10:51
so I have to be so grateful that when I had my twins there was treatment available yeah
10:55
but yeah I can't I can't ask her anymore they're happy they're smiling and
11:01
and they've got the best mummy in the world well they have yeah so that's brilliant And also, you don't want to take them out in their buggies now
11:07
It's blinking miserable out there. I just find, though, that when you've got twins, people just, they're like..
11:12
It's Torel! Yeah! It's crazy, the reaction to twins! It is a boot special as a two-foot thing
11:18
And what's next for you now? I mean, what's going to happen, like, music-wise
11:23
So, listen, I would never say never to music, but for me, like, my girls are my main focus
11:28
I'll be honest with you, I ain't got time. No, I know. I really don't. Well, it's round the clock
11:32
It is anyway. They're my whole heart and soul and they're my main focus
11:37
and I just want to continue advocating for them and trying to get this heel prick test changed
11:41
and also just getting them strong. That's my main focus because essentially
11:45
that's going to determine the future. So that's my main focus right now
11:50
Well, you're doing a fantastic job. We love you. I should also point out it is rare. I know that people will be listening
11:55
and panicking. How rare is it? Well, I think it's... Oh, gosh, you've put me on Twitter
12:00
I don't want to say the incorrect number. No, okay. I think it's roughly around like 60 kids will be diagnosed every year
12:08
And the irony is, is there's people down your road? Yeah, which is just mental
12:12
What do you mean? So the set of another lady that I have been speaking to
12:17
that has another lot of twins, literally lives down the road to me
12:20
You're kidding me. They've got SMA type 1, which is like just mad. What are the chances of that
12:25
I know, it's just unreal. Listen, thank you so much, Jessie, for coming in
12:31
Good luck with the, it's called Jesse and Nelson Life After Little Mix you can see it on Amazon Prime tomorrow
12:36
I urge you to go and see it it's a fantastic watch and go over to our socials
12:40
and Jesse socials and get that petition signed Jesse Nelson lovely to see you darling
12:45
thank you guys this is hot
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