JESY NELSON - PART 1: Becoming a Mum & The Fight No Baby Should Face

0:00Coming up in this episode of Great Company. When you become a mum, you almost have to become like a superhuman. They are like my whole heart and soul. You could not write it then what was about to happen. The feeling I got when I walked into the room was like someone had died. There'll probably be a day maybe when the girls turn to me and they say, like, mummy, I don't think I can do that. I'll play them a documentary and I'll say, yes, you fucking can because look what you did. Yeah. Hi, I'm Jessie Nelson and I'm in great company. Please welcome, Jessie Nelson! Do you look back at that time and just go, that was...

0:37Oh God, yeah. I had my really shit times in Little Mix, but I also had some of the best times of my life. We were best mates. When you decided to leave, that must have been hard, right? Yeah, it was really tough. From the minute I got off X Factor, I felt like I didn't want to be in it. The way it was making me feel was just like I couldn't, I could not handle it, I couldn't deal with it. And my brother was like, just make as much money as you can and then leave. Best advice. Now I've been presented with this situation with my girls, I can now, you know, go above and beyond in terms of just the things that they're going to need.

1:09How are the girls now? They have just overcome so much and they are so tiny. And I'm like, there's nothing you won't be able to do. This treatment is life-changing. There's been so many families that didn't get the treatment. That's why you speaking out is going to help so many people.

1:32Hello, everyone. My name is Jamie Lang, and this is Great Company. Hey, guys. Welcome back to another episode of Great Company. Now, my guest today is the amazing Jessie Nelson. Jessie was part of one of the biggest girl bands of all time, Little Mix. I'm a huge fan. I absolutely love Little Mix in every single way. And more recently, she's become a mom to twins Ocean Jade and Story Monroe. But I don't know if you saw her Instagram post or saw the news. that Story and Ocean have been diagnosed with something called spinal muscular atrophy, SMA, a rare condition that causes muscles to kind of weaken and waste away.

2:10And when I heard this, I reached out to Jessie to invite her onto great company to share her story and raise awareness about SMA. I mean, this conversation is incredibly powerful. And I'm so grateful to you, Jessie, for trusting us with it. We covered so much that we've decided to split it into two parts. So part one is today. This is what you're listening to. And part two is coming out on Friday. So keep an eye out for that. Before we get into it, I'm just going to ask you to do one quick thing for me, if that's possible. Please just follow and subscribe to Great Company. It's totally free and we want to keep it that way.

2:42Okay, and it really helps us keep bringing the guests you love and making the show bigger and better for you every single week. If you can do that one thing, thank you so much. Okay, here's part one with the incredible Jesse Nelson.

2:55Hi, I'm Jessie Nelson and I'm in great company.

3:01Hi, Jessie. Hi. Hi. Thank you for having me. Man, are you kidding me? Can I just say, this is a bit fangirly, but I actually am a fan. I don't think you understand. I've watched Made in Chelsea from day one. I'm a huge fan of yours. Oh, thank you. Yeah, but honestly, Jessie, everything you're about, everything that you're doing. Thank you. How are you feeling at the moment? I have good and bad days, I'll be honest. I won't sit here and be like, oh, I'm fucking amazing because I'm allowed to swear. Fuck, shit. Anything you want. I've got the biggest potty mouth, so. Great, go for it. Yeah, I have good days and bad days.

3:34I feel like since getting their diagnosis, you know, it's just been like that. Sometimes I wake up and I'm like, feel almost as like I don't even know that they have it. And then other days I just want to lay in bed and cry, but I can't. because you know I have to be there for them and I have to like I was saying it to the guys before like I feel like when you become a mum you almost have to become like a superhuman because you're just irrelevant like that sounds I'm probably going to get absolutely like no but you are for saying that but I feel like yeah when you become a mum like you you I feel like I don't really matter anymore like they are like my whole heart and soul and like I have to just get on with it whereas before things that seem now seem so just ridiculous to me that I used to worry about yeah I'd sit in bed and I'd cry and I'd feel sorry for myself and I'd have days where I just wouldn't even get out of bed and now like I don't I don't have a choice to do that because I have to just get on with it and I do I just think women are amazing because we just we just crack on can Can I say, I said this to you off mic, but I can say, women are amazing.

4:49We are. We actually are. And I didn't realise how amazing we are until I became a mum. Can I also say, so last night I sat with Sophie and we watched the first two episodes of your documentary, which is coming out, which is just, it's moving. It's real. Thank you. Thank you so much. It's authentic. It's kind of everything. thing and with so much stuff out there this is something that's really going to cut through for so many people oh man how are you feeling about it it's mad right because when I first got pregnant I've been offered to do this like quite a lot of times to like have cameras be lens and just film me and I've always been like no not for me I'm I don't I want to keep my life private and then you know I'm like a massive fan of reality tv and whenever I watch just yeah any anyone shows I'm always like how lovely to like when you're older to have their memories to watch back so when I got pregnant I was like you know what I feel like now's the time because how lovely I can when the girls are older I can sit and they can see all of this back and that is one of the reasons why I wanted to do it and then I was just like you could not write it then what was about to happen and what then played out and I just think it's I also believe that that's the reason why the cameras were letting in my life at that point what do you mean by that because now this this has happened and they've got their diagnosis and all the stuff that I went through and it's like and I want to raise as much awareness about it as possible and it's like yeah now the cameras are there in the time that I went through that and so now I'm like so grateful that they were there because hopefully now it's gonna spread even more awareness once this comes out I want to get you know I really want to get on to the diagnosis and what you're dealing with with your babies and um just firstly just for me I'm just like sorry that you're having to deal with things and lots going on during such a magical time thank you it's shit it's really fucking shit it is shit but at the same time I'm just still so blessed because my girls are they are literally superhuman honestly like I look at them and every day they are happy and i'm like like what have i created like they are just honestly i just they're they just astound me every day like the shit that they've had to go through and they're still happy and smiling and i'm like that almost then gives me even more like strength to be like well what gives me the reason to be sad it's just mad jamie because I never wanted children.

7:31Did you not? Oh my God. Like I was like, like anytime I met anyone and they'd be like, no, so I want kids. I'd be like, for fuck's sake, here we go. Cause I just did not, I was not maternal at all. There was not one maternal bone in my body. Even when I was in little mix, the girls were like, you don't want children. I was like, no, I don't. Like they're just, like I love my nephews, but even when I had my nephews, I was like, okay. Like now, like go back to your mum. Like, I just, it just wasn't there for me and then when I fell pregnant which wasn't on purpose this feeling that I got was just very strange and abnormal because I was like why am I happy and it really freaked me out try and describe it to me what was it like well I just it was like butterflies but like excitement but then also like fit like fear and worry and I was like and I couldn't understand it I couldn't understand why I was feeling these when I have never wanted children.

8:28And then, you know, me and their dad was like, what are we going to do? Because he always wanted to be a young dad. I knew he always wanted children. And that was always a bit of a like, in our relationship because we were like, at some point this is going to get really fucking awkward because what are we going to do? Because I don't want children and you do. So like, this is so awkward. And, you know, we'd been together like two years at this point. So, yeah. So when I felt pregnant, I was like, I was so overwhelmed. by all these feelings but I was like this this there's a reason that I feel this way and I just remember getting on the phone to my sister-in-law and she was the only person I told at the time and she was like Jessie I think this is meant to happen to you like yeah she was like I think you'll be an incredible mum and she was like and it's okay to feel scared because when I fell pregnant with George I was shitting myself and she was like that's totally normal she was like but I really don't think you can ignore these feelings and I knew that I couldn't and then just mental i never wanted children and then the universe gave me twins you know in your yeah which is like you couldn't write it in your documentary you say um before i got pregnant i felt lost i didn't have a purpose no honestly like only like my real like close friends and team know that like for a very long time i felt very lost like just honestly felt like i had no sense of purpose i was constantly trying to find like the next project that would make me feel Worthy, feel something right Yeah, because I still felt like that even when I was in Little Mix Like I loved Performing and I loved But I still felt like that wasn't Like what I was truly meant to be doing I can't, there was like There was something missing and that's why when I made Like my documentary when I was in Little Mix That gave me like a sense Of purpose and then when I left I was like searching for that and I just didn't know what it was And then I feel like my girls Came along and they just made me the person I've always wanted to be.

10:34You put a post on Instagram very bravely talking about your baby's diagnosis. And I think me and the whole world, hearts just broke for you. Because it was you being vulnerable and open and honest. and I sent you a message saying I hope you're okay and what was so amazing is you sent me back to saying I just want to spread awareness about this can you tell everyone who doesn't know yeah the diagnosis what's happened with your babies so spinal muscular atrophy is a muscular wasting disease and what it does is well they don't have a gene that we all have in our body so So because of that, their now muscles are deteriorating and wasting away.

11:20And if you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything, and they will die before the age of two. Oh, man, I'm so sorry. That's okay. Well, it's not okay. But it is what it is, and I just have to accept it. And now just try and make the best out of this situation. And my girls are honestly, I mean, I've said it so much. They are the strongest, most resilient babies. And I really believe that they are going to defy all the odds. I really believe that because they already have. It's mad. They were in my belly.

12:07They had TTTS, which it's, it's affects a rare percentage of identical twins. And that means it's when there's only one placenta that both the babies feed off of. And it's crap for both of them because one will get more of the nutrients and one won't. But either way, it doesn't matter. Even the baby that's getting too many nutrients, it still affects them. It's not good. And so if you don't get treatment for that, they will die. It's like 95%. Yeah. This is what's said in the documentary. There's 95 % of this. Yeah. That they won't survive. And it's just mad to me that like when it's like I watch it so differently now.

12:44like when I've watched it back I like see everything from a completely different lens because I'm like they had that but they also had SMA and then they just went on to like fight it all. When you find out the diagnosis you said what happened how do you discover that what are the symptoms what are the the signs? So we'd been in the NICU neonatal ward for a month with them because they were obviously born early because of the situation I had with TTTS so they came early. Can I ask how early? Yeah, they were 31 weeks and they were tiny. They were so, so small. It's so mad because I remember seeing like full-term babies around the time that I had them and full-term babies look like toddlers to me.

13:30That's how tiny they were. And I just remember thinking I can't ever imagine them being that big. What, the size of your hand? Oh yeah, yeah, literally and that was so tough that was so hard because I had my c-section and before I went in for that they said to me um because I'd been living in hospital for for nearly three months because of my situation and um because I was told that they could come at any point they didn't want me to yeah so I lived there for like nearly three months and because of the situation I was in and I was told that they could come at any point they they wouldn't allow me to go home because obviously I went home and they came and the survival rate would be next to nothing so they wanted me to be in hospital just to be ready for if they came I was told they were going to come at 21 weeks they were going to go at 24 weeks and it just kept going on and on and on which was amazing because we were just like you know at one point we didn't even think they were going to be here so they came and right before I went in for my c-section I'd had to because I'd been in hospital and bed bound for so long I'd been taking these blood thinning injections and she didn't clock yeah yeah so right before i had my c-section the lady said to me oh sorry just quickly before we you know they numb your back yeah um when was the last time you had your blood thin injections i said oh two hours ago and she said oh jesse i i can't i can't give you the injection we'll have to put you to sleep oh my god and i was like oh you're actually kidding me so now i'm gonna miss this as well like i feel like in my whole pregnancy everything was was taken from me like all the things you're supposed to enjoy they were all taken from me and I was like that was my one thing I was so excited to see like the birth of my children and I didn't get that either so I was like but I was in such a state of like shock that they were coming that I kind of just forgot about it and I just wanted them to be safe and well so anyway I got put to sleep what are you feeling when you go to sleep what is the what is scared I was so scared because they were early and you just don't know.

15:28You don't know what the outcome is. Are they going to survive? Are they not? So I was just terrified. And Zion wasn't allowed to be in the room. So he had to be out of the room the whole time. I can't even imagine those emotions that you're going through at that point. Yeah, it's horrible. Like, let alone all the complications. And going to being put to sleep and not even knowing what the future holds. Yeah. And then it's like you wake up and you're so out of it. Yeah, you don't know what's going on. I remember waking up and Zion was there and he was like, he was like, they're fine. They're like, they're amazing.

15:58And I was like, Oh my God. And I just wanted to see them. And it's, it's the most awful feeling when you've carried babies for nine months in your belly and you wake up, they're not there and you can't even see them. And I remember being like, well, I want to go see them. So you can't, we can't see them yet. We need to make sure you're okay. And then you can go see them. And then when you do go see them, they're in a plastic box and you can't touch them. And it's like... These little things. Like, it's so unnatural as a mother to not have your baby on you. And then you literally see them in this, like, which is essentially a plastic box.

16:35And you can't touch them. And you just have to see them with all these tubes and these masks on. And they're so tiny. And all you want to do is pick them up and cuddle them and you can't. And it's just, it was horrific. and no one could have prepared me for that part because I just felt helpless and when they would cry like your natural instincts like you're knowing like to just pick them up when they cry because you want to comfort them and when they're crying and they've got these massive masks on and these tubes and you can't pick them up and you just have to look at them in a box it's like it's horrendous yeah it's hard that is yeah no no one could have prepared me for that part and it's it's gonna make me go it's sad it's sad for people who don't even have kids when you have a kid you can't even imagine so when did you first hold them?

17:31the next day and that was just like magical it was so magical and that's in the documentary we filmed everything we filmed everything well done for being brave enough to let cameras in and see that and do that the awareness you're going to spread is going to you I cannot imagine the impact I hope so Jessie I cannot I cannot tell you and I mean you will feel it I'm sure but I it's incredible that you've done that because the emotions you must have been going through and the toughness and the heart and all those things when when did you get to take them home so we were in the first hospital for a week i then had to be sent back to my local hospital and that was really tough because i obviously wasn't staying i couldn't stay there so then having to like even just that like leaving your baby in the hands of obviously who are amazing but a stranger but a stranger and you just have to go it's honestly i can't even describe to you how unnatural it is to have a baby and then just be taken from you and you You just can't even do what's like your natural instinct is just look after them and care for them.

18:49Especially as a mother. Yeah. Then they were there for a month in my local hospital. And that is like, that is one of the hardest things I've ever had to go through because I just, every time I would come in, having to see another woman hold and look after my baby was just like heartbreaking for me because I was like they don't even know I'm their mum they they've been taken from me and now every time they are picked up they're picked up by a different woman how and I kept saying to Zan how am I mum like how do they even know that I'm their mum and everyone would go to me oh don't be silly they know your mum from your scent and your heartbeat but until you go through it I can't explain to you how painful it is and I'll never forget when I walked in and one of the ladies was feeding her for the with a bottle for the first time and I was just like I just I felt like I just wanted to die because I was like that's my job that's my job that's what I should be doing I can't even explain to you how painful it is to like...

20:02Angry? Yes. And it's such a horrible feeling to have because they're there to help and look after your children and they're doing an amazing job. But at the same time, you can't help these feelings. It got so bad to the point where I remember when my mum, because obviously at that time, because they're so vulnerable, you're only allowed mum and dad and grandparents. And bless my mum, I remember when she came and I couldn't even let my mum hold them because I was like, I just want, like, I don't want any more women holding them because they don't know who I am. And I remember when I eventually left, I was like, I don't want anyone in my house.

20:40I don't want any woman in my house. I just want them to know me. And I've only really just kind of gotten over that now, that feeling. Even my sister, me and my sister, like, look so much alike. And I remember when my sister was like, I'm so excited to hold them. and I remember my whole body was like rejecting. It was just like, no, no, I don't want to hold them. But at the same time, I knew how much she wanted to hold them. And the whole time she was holding them, all I kept thinking was, we look alike and they're going to think you're their mum. Isn't it mad? But you were a lioness and that's what you do.

21:13You're in protective mode, right? You just want to protect and be there and hold and everything. When did you notice that Ocean's story maybe weren't developing as quickly? So this is the part that just... I'm trying to get over. So when they were in the neonatal ward, you're constantly told, don't compare your babies because they're not going to be like full term babies. They're not going to reach the same milestones. They're not, don't, just don't because you'll just talk to yourself. So that was like, and when I tell you that, they like drill that into you, like don't compare your baby. So when we took them home, I noticed all the signs, but didn't know what they were.

21:56I just thought it was because they were premature.

22:01So even when I was, oh, fuck, even when I held them for the first time, their legs were like in this frog leg position. And I remember turning to Simon and saying, oh, their legs are so cute. 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 what 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 I've got unusual little shaped bellies and she was like I know it's because they're premature and I there's just I just saw all of the signs but I just had no idea because I was constantly told don't can bear your baby so I just thought that was normal and then me and Zion decided we wanted to move to Cornwall because we were 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 like peaceful setting and just be around the sea and just live like a kid so we went we went to Cornwall and I didn't 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.

23:23So 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 pick their legs quite frantically, but theirs were just like this. And, you know, cause 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 um Jessie they don't they don't move their legs very much have you noticed that and I was like really and she was like yeah have you not noticed they just don't kick their legs and they should be kicking their legs I said mum they're premature they're like you you're comparing them and she kept comparing them to my nephew she's like no but don't you remember when georgia's a baby and he would really get and i said but georgia's a full-term baby you can't compare them and we've been told that she was like i know jesse but i just something's not right she was like there's something not right and my mum is such a oh my god she's such a warrior she worries about everything like everything and a bit like me thinks the worst in every situation and so I just thought that was her.

24:34Disworrying. Yeah. And then a week went by and I remember changing the nappy and just thinking, oh, they actually don't move their legs at all. Like, for some reason, they just stopped. Like, stopped. There was nothing. It was like that little toe would move. And I'd be like, and I remember saying to Zain, Zain, I actually think my mum's right. Like, this isn't normal. I said, we need to go see someone because something's not right. So we went to the paediatrician and they do all these tests on them. It's horrible. They're almost like, well, they are. Babies that have SMA, they're like ragdolls.

25:15They can't. Even now when I hold them, people still think they're like newborn babies because of the way that I have to hold them because they can't hold themselves up. They're like newborn babies. so they're very floppy they can't do anything um so he's like he's like tipping them upside down and he's doing all this stuff on them and you're a bit like it's very overwhelming and he said um okay uh and i just you know you just know you just you just i don't know if it's a mother's instinct or it's just an instinct i just knew from the like way he was speaking to me that something serious was going to happen and he said um okay they're showing signs of hypertonia I was like what's that and he said well before I get into that I want to get them for some blood tests and I want to do um a brain scan on them I was like a brain scan he said yeah one of their heads looks quite big and I'm worried she's got fluid on her brain and I was like okay and he was like so so we need to do that straight away I want to do that straight away I said okay how long is that going to take he said I don't know it could could be a couple of weeks I said well you know at that point I was like I'm going home I'm going home and I'm going to go see someone privately and I remember walking out of the room and I just burst into tears and Zion's very like the complete opposite to me he thinks the best in every situation which is probably you know how we all should be but I'm just not wired that way no but you've also you've also been in fight or flight mode since 21 weeks right so you're already alert on everything yeah and um I said we're going home and I remember getting on the phone to my mum and she was like what did they say what did they say and I said oh you said they're shining signs of hypertonia and she was like what's that and I said well he told me it's poor muscle tone and everyone was oh that's all right they're just gonna need physio and Zion was like they're just gonna need physio Jess that's like we're really worrying that's like and i was like i just i just knew i can't i can't explain this feeling i had i just knew and everyone was like don't google don't google well of course i googled and the first thing that comes up when you google hypertonia is sma type one and it says if you do not get treatment your baby will not make it past the age of two and i just remember feeling like you know like in a movie when have you seen it when like the person is standing and the whole world is spinning around them and they're like that's that what that moment felt like and I before I even read what the symptoms were I just knew that's what they had I just knew it I can't I don't know why I just knew and then it showed me the symptoms and every single symptom was what they were showing and I said Zion just read that he's like that's not what they've got that's not what they've got you're being negative you're being negative I said I'm not being negative I don't know that's what they've got I said and and if this is the case like we need to fucking do something because time's off the fucking essence now like well this is not a joke so we took them to a private pediatrician in London and that was on the worst part so he did Pretty much the same thing that the other guy did.

28:33But he didn't beat around the bush. He went, well, this is really alarming. He said that? Yeah. And I was like, okay, what do you mean by that? And he said, well, it's like your children are practically paralyzed from the waist down. And at that point, I was just like, okay. I said, all right, what do we need to do? He said, well, you need to get a blood test. He said, because this is very serious. like I believe this is very serious I said okay where do I get a blood test done where can I go privately he said you can't so what do you mean you can't get a private blood test he said you you can't they won't do a blood test privately on a baby these this little so at this point I'm like weeks have gone by now right and I'm like this is like and and the craziest thing as well is that now I'm really starting to see their legs deteriorate because it's that quick so now I'm like then there's no movement now when I saw that was a little bit and now there's nothing so he was like right first thing I want to do is send you for an EMG I said what's an EMG he's like well it's going to tell us whether it's nerves or it's muscles if it's nerves then that means that's to do with the brain and if it's muscles that means it's you know that they don't the muscles are not working I was like right okay so he's like so I'm going to send you to have an EMG done and I was like alright so well after that then what happens and he was like well it'll give us like a 95 % accuracy of you know what the diagnosis is going to be but until we get a blood test we're not going to know and I was like oh how can I get the blood test he was like what I need to do is write you up a letter and then you're going to need to take that to your local hospital and I'm just thinking oh my god this is just days and days and days of like wasting time so they had their EMG and I said to the lady, how long do these results take?

30:23She said, oh, well, I'll have them by the end of the day. And I was like, oh, brilliant. So can you send them over to the doctor? She said, yeah. So I rang him and he wasn't answering and his secretary answered the phone. She was like, he's gone away on holiday. And I'm like, is this a fucking joke? I'm like, okay, well, I need these results. This is very serious. Oh my God. And she was like, I'm going to try my best, but he is away on holiday. and then within a few hours she called me and she said um the doctor would like to speak to you I just knew I knew I just knew because I was like he wouldn't leave it and then he did a zoom with us and he said I am and from the test results 95 sure that they've got SMA type 1 and I said okay so so now what at that point I was in um I feel like I'd kind of already like got to that point that they had it and at this point my brain was like well now we need to just get them the treatment so I wasn't really processing the diagnosis I was more like we just need to like now take the steps to get them the treatment and how quickly can we do that because they're literally fucking deteriorating in front of us.

31:41So he said, I'm going to write you this letter and the best thing you can do right now, because you can't take them to Great Ormond Street. So he said, you need to go to your local hospital and you need to explain to them how severe and important it is that they look at your babies. And then once they have done their assessment on them, then they can refer you to Great Ormond Street and then it's whether Great Ormond Street think this is serious enough. So I'm like, you know, when you're just like, you feel so helpless. It's like. And you're just like, you can't understand why people aren't reacting in a way that you want, like we need to do something, everyone.

32:23We need to be now, now, now. So he wrote us the letter. That night we went to A &E and I just explained the situation. I showed them the letter. And they said, okay, they saw straight away. There was no waiting around. At this point, we now have to, they've looked at the babies and they've said they're underweight. They're severely underweight. Bearing in mind, prior to all of this happening, I'd been taking them to the GP and saying, my babies are not feeding. They don't take their bottle. They're crying. At one point I was like, they've got a sore throat. Is that why they're not swallowing? Oh, my God.

33:01And they were like, oh, you know, they're premature. and you know you just got to keep trying little and often little and often and that was all that was all i was ever told there was no well yeah they're underweight like let's like take this seriously so yeah so then the hospital said they're underweight they need to go and feed in tubes because they just were not they'd take about 10 mil on the bottle uh so so then they went on feeding tubes and they had to stay in hospital for two weeks before you go into great and it feels like you're back to where you began yeah all but and and then all that was like coming up i like felt like i was being triggered yeah um so yeah so then they were in hospital for two weeks then they went to great ormond street and that that was a whole nother level i just remember walking into this room and there was like eight people like waiting to see us and it's so overwhelming because you're like fuck like you you really like hit you how serious it is and each person is like assigned to do something to like test your baby walked into the room and it's just so it was just like it sounds so dramatic to say it but it's like the feeling I got when I walked into the room was like someone had died

34:27so then they said right first of all we want to sit you down and we just want you to tell us what you've been experiencing what's been going on how long you've like noticed these signs for so I did all of that then they said okay cool we're gonna assess the babies now you know you're like oh my gosh like how many fucking times we need to keep assessing the babies like Like, I've done this so many times now. And I get it. They have to. They have to. But we know what's going on here. Yeah. And I'm just like, just do the fucking bloods at this point. Like, really? So they do their assessment. They say the same thing.

35:04You know, we're 95 % sure they've got SMA type 1, but until we get these bloods done. So, you know, we need to get these bloods done. Also, we need you to sign these forms now that you are okay with them starting getting this treatment because time is of the essence now, obviously, as you know. And then they start telling you what your baby's survival rate is. And it's just, yeah, it's a lot. And then they said, okay, well, it should take about three days for the bloods to come back. And then once we've got the confirmation, they can start the first course of treatment. And then we took them home.

35:44And then we got a Zoom call. And that was when they told us. but I was already there. I already knew. There was no shock for me when they told me. I'm so sorry. Thank you. How are the girls now? Oh, they're amazing. Really? But they've always been amazing. Like, you know, even for everything they've gone through, they've always just smiled and been so happy and showed so much resilience. And it's like the one thing I always take from it is that they don't know, you know. they this is all they've ever known which is so sad right but you know they're they're not old enough to know what's going on and they have each other and I'm do you know how blessed I am that they have their twins and they're going through it together they're never going to be alone and that just like makes me feel so much better about the situation um but you know they're doing as good as they can be right now.

36:46But the thing is with SMA is it's like everything's so uncertain. And that's the part that can really drive you crazy because you can really go down a dark hole. Are they going to do this? Are they going to do that? And you just drive yourself mad because you have to stay away from that. Yeah. You just have to take each day as it comes and take any little thing that happens as a win in terms of, you know, progress. Can I ask a completely naive question? Will they potentially be able to walk? they've told us no but you know I am a big believer of manifestation and you know look how fucking far they've come look what they've done already and look what they've beat and I'm like who says they won't so I'm going to just do everything in my power to give them you know the best opportunity possible to be able to you know walk but if they don't It doesn't matter.

37:44That doesn't define who they are. They're fucking insane. And, you know, that's why I feel so, like, grateful and happy and proud that I'd let the cameras in at this time because I cannot fucking wait, yeah, because there'll probably be a day maybe when the girls turn to me and they say, like, Mummy, I don't think I can do that. And I'll say, I'll turn the TV on and I'll play them the documentary and I'll say, yes, you fucking can because look what you did. and I'm so happy that I have that to show them because they have just overcome so much and they are so tiny and I'm like, there's nothing you won't be able to do.

38:29And you spoke about your mum earlier. She's the best. I could not, I'd be fucked without my mum.

38:40Yeah. she's just honestly yeah she's just amazing but it's it's a real journey it's like every day is different but you just yeah but you know what Jessie the journey that you've had in your life right from when you were a kid to going on X Factor and doing Little Mix and having the tough time you had in Little Mix right and having you know the horrendous amount of abuse that you had you know and all those things are just kind of like you're this survivor and you're you are and you you're resilient and you keep going and your babies couldn't have a better mum thank you truthfully right truthfully right so much and you know um you're I think it's your best friend in your documentary says uh Jesse turns pain into power which is kind of incredible right yeah I mean it doesn't feel like it when I'm in that moment but I mean that's lovely

39:44there'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 hillbick 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. Explain that to me. So the test can prevent it?

40:18So 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. Because then that can then prevent things from deteriorating. When I tell you, this treatment is life-changing. I feel like I need like 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 in a wheelchair because obviously the parents didn't know and then you know unfortunately didn't get her treatment in time um to be able to save her legs and then there's the sister when they when they went on to have another child they knew what they were going to be dealing with so they got her treatment early enough and she walks she's does gymnastics she's and you wouldn't even know she has SMA and that's the difference why didn't they do the hillbrook test money but the part that just really like breaks my heart is that it costs so much more for then what the nhs are gonna have to find out for all the stuff the equipment the everything that then the child then has to have because they don't haven't had this treatment honestly if i showed you the hallway of my house every week every 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 gets to decide whether your child will walk or not?

42:18If, and I'm sure there are, their parents are seeing now who perhaps their kids have SMA or they've just found the diagnosis, what would you say to them? If they've just found out? Yeah. 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 what I come along and because I have some a few million followers now you're going to take it seriously it's like that shouldn't be the case but you know it is what it is and you just gotta fucking do what I can yeah but that's why you speaking out is going to help so many people yeah which is just so incredible you know you as you've been through all so much when you look back now and having experienced this do you sometimes think the stuff that I used to care about and worry about doesn't even matter

44:13but this is why I say my girls have made me the person I've always wanted to be because when something like this happens in your life oh my god everything else just feels so insignificant is it really oh my gosh Jamie like the shit I used to worry about I'm like how pathetic like how pathetic that you worried about that and it's like they're just you know they I feel like they've just been eradicated now so like you know I've always always been so conscious of you know what I look like and my way and I honestly couldn't give two fucks anymore I could not give two shits because it's just so insignificant in my life right now.

44:55And it just puts everything into perspective. And that's why I'm just so grateful for them as well because they've just changed my whole outlook on life and how I feel about myself. And they're just amazing. Jessie, if you're listening, I just want to thank you from the bottom of my heart, my team's heart, from everyone here for being so open. You're just an inspiration. And to everyone who's listening, I'm complete awe of Jessie. I know you are too. Her strength, her courage, her willingness to talk so openly about such a raw and emotional part of her life. I mean, I cannot even imagine what she is dealing with right now, having just had a kid and knowing that all you care about with your baby is them to be happy and healthy.

45:44That's all you want. And Jessie being so open about that is, wow. Now, we're going to be back on Friday with part two, okay, with Jesse Nelson. Make sure you don't miss it because it is incredible.