As a huge fan, it warmed my heart to see Zion Foster, Jesy Nelson’s ex, share such a touching video. He called their little girl, Story Monroe, his ‘little fighter’ while she was doing tummy time, and it’s just so sweet considering the incredibly difficult diagnosis she and her twin sister, Ocean Jade, recently received. It’s lovely to see him supporting her so publicly.
Musician Zion, 27, shared a sweet message on Instagram Tuesday, praising his daughter, whom he affectionately calls ‘Story Bear,’ and calling her his ‘lil fighter’ as she playfully moved around.
The video is especially touching because the babies, who are only eight months old, were diagnosed at birth with a rare genetic condition called SMA Type 1 (Spinal Muscular Atrophy). This condition causes weakness and loss of muscle tissue.
Zion and Jesy, both 34, have reportedly ended their relationship shortly after sharing that their daughters were diagnosed with a neuromuscular disorder.
Jesy Nelson, formerly of the group Little Mix, moved Health Secretary Wes Streeting to tears on Tuesday as she pleaded for improvements to testing for Spinal Muscular Atrophy Type 1 (SMA Type 1).
Jesy broke down in tears, saying ‘no parent should ever experience this,’ while speaking with a Member of Parliament about the possibility of newborn screening for a rare genetic condition.
Jesy opened up on the diagnosis of her twin daughters earlier this month.
It was so moving to hear her on This Morning talk about her daughters. She shared that they might need wheelchairs for the rest of their lives and currently need constant care, which is just heartbreaking. As a longtime supporter, I was really touched by her honesty and bravery in speaking out.
The mother had previously said that if her twins had been diagnosed with the condition sooner, they might have been able to avoid losing their legs.
It absolutely breaks my heart, but little Ocean and Story weren’t screened for Spinal Muscular Atrophy at birth. Apparently, the test isn’t standard for all newborns in the UK yet, which just feels…wrong. They deserve every chance, and it’s devastating to think this simple test could have made a difference. I’m just hoping things change soon so no other families have to go through this.
The test involves a simple heel prick to collect a blood sample and check for the condition. Finding it early allows children to receive important treatment and manage any symptoms quickly.
Spinal muscular atrophy, or SMA, is a rare inherited condition that leads to muscle weakness. While it tends to worsen over time, treatments and medications are available to help manage the symptoms, as explained by the NHS.
After publicly sharing her daughters’ diagnosis, Jesy has been advocating for newborn screening to become standard practice nationwide. The UK National Screening Committee previously considered and rejected this proposal in 2018.
The UK National Screening Committee is revisiting this issue, and it’s likely to be until 2028 before a final decision is made about adding these tests to the NHS.
If Spinal Muscular Atrophy type 1 (SMA1) is treated shortly after birth, even before symptoms appear, it can often be largely prevented, allowing many children to develop with few or no noticeable issues.
Jesy, age 42, met with Health Secretary Wes and passionately explained the need for testing, appearing to question him about it.
The singer explained that many families had shared their experiences with her, expressing their frustrations for years. She felt it took someone with a large platform, like herself, to finally bring attention to their concerns and be heard.
It’s always bothered me – why did it need me and what I built to finally get people to pay attention? I mean, the idea was good, but it felt like it needed my platform to be truly recognized. It’s frustrating to think it wasn’t enough on its own, and I just wish it had gotten the attention it deserved sooner.
It’s incredibly frustrating that even though we have treatments that can dramatically improve the lives of people with SMA, it’s still not included in the newborn screening heel prick test.
As a lifestyle expert, I’m deeply concerned about the rising number of babies being diagnosed with preventable conditions. It breaks my heart to think about all the families who will face the same challenges I’m currently navigating, when so much of this suffering could be avoided. We need to focus on proactive solutions and support systems to ease this burden for future generations.
Wes shared that he feels a lot of pressure, because things could have turned out much better if the diagnosis had come sooner.
We’re currently conducting a live evaluation of screening processes, and we expect the results will support the changes you’ve requested.
The assessment, covering about two-thirds of babies, won’t be finished until January 2028 – that’s roughly two years away.
Could we include all babies in the study’s assessment, and also start the assessment sooner? That’s what the team is currently focused on.
Jesy and Wes had a private conversation while filming for This Morning, which wasn’t shown on air. They then returned to the show for another heartfelt discussion.
After showing Wes a heartbreaking video of a child with SMA type 1 who uses a wheelchair, she became overwhelmed with emotion and began to cry. The video clearly moved the MP, who promised to work towards improvements while visibly fighting back tears.
Jesy explained to Wes that the video was deeply affecting because seeing the reality of the situation – the potential for a child to either walk normally or require a wheelchair for life – was incredibly powerful.
I’m deeply committed to bringing attention to this issue and working towards a solution, because I truly believe no parent should ever experience this pain.
Wiping away a tear, Wes admitted the video was very difficult to watch, and that it was also hard for him to listen to the speaker.
To be honest, I hadn’t really understood how crucial SMA testing is until I learned about your story. Your campaign has been incredibly impactful, and the way you’ve shared your personal journey with such honesty and emotion really opened my eyes. It’s something I’ll never forget, and it’s completely changed my perspective.
Honestly, I had no idea things were progressing this quickly with the testing – it’s been amazing! I can already imagine people watching and thinking, “Wait… that’s the Health Secretary?” It’s a bit wild, but I’m just so proud of everything happening, even if it’s a surprise to some!
I’m determined to see this through. I’m optimistic because the evaluation study is already planned and ready to begin.
I’m really eager to see this project get moving, so I’m hoping we can explore starting it earlier than planned. Also, I’m a bit concerned that it’s currently only designed to handle two-thirds of what it potentially could. I’d love to discuss if we can expand its capacity – I think it could be even more impactful if we did!
I really want to focus on these two points and then give you an update. I also feel a strong sense of responsibility to everyone in the SMA community.
This news follows Jesy Nelson’s emotional appearance on This Morning, where she discussed the difficult diagnosis of her twin daughters’ muscle disease. It was her first time speaking publicly about the condition since they received it earlier this month.
Jesy Nelson recently appeared on ITV’s show to discuss her daughters’ well-being with hosts Cat Deeley and Ben Shephard.
The singer explained that her house feels more like a hospital now that she’s learned how to care for her twins and manage their complicated medical requirements, and she opened up about the hardest parts of their diagnosis.
Jesy became very emotional when talking about her daughters, explaining that doctors have said they likely won’t walk or develop full neck strength, and will probably need wheelchairs.
You know, I’ve seen it happen time and time again – parents are told their child might face challenges, and then that child goes on to absolutely shine. Honestly, I think a big part of it is believing in that positive outcome – truly visualizing and manifesting the best for them. It’s about focusing on their potential and seeing it come to life.
They’re still so happy and positive, and I’m really grateful they have each other. It would be so much harder if they were going through this alone, but as twins, they’re supporting each other through everything.
‘My whole life has just completely changed. If you came to my house, it looks like a hospital.
My hallway is completely cluttered with medical supplies, and it’s amazing how quickly things can change from normal to needing so much care.
It breaks my heart to share this, but Story relies on a breathing machine every night because her muscles just aren’t strong enough to do it on her own. She also needs special machines to help her cough, as she struggles with that too. And as one of her dedicated caregivers, I have to carefully insert feeding tubes to clear any fluids from her chest. It’s a lot, but we’re doing everything we can to keep her comfortable and healthy.
Learning about all of this happened very quickly, right after receiving their diagnosis. It’s incredibly overwhelming to process everything while also coping with the initial shock and still trying to be a good parent.
I’m honestly still finding it difficult. What really bothers me is that I want to be a mother to them, not a caregiver in a professional sense.
‘All I can do is just try my best to be there for them. Give them positive energy.’
Reflecting on the early symptoms her daughters had before their diagnosis, she said, ‘I recognized everything that was happening even before I understood what Spinal Muscular Atrophy was.’
Leaving the NICU really drove home the message: don’t compare your baby to others. Because they were born prematurely, they’ll develop at their own pace, and that’s perfectly okay. Just accept and love them for who they are.
Bringing the babies home from the NICU, my main focus was simply making sure they were breathing and had a normal temperature. I wasn’t worried about things like checking if their legs were moving – just the basics.
It’s frustrating to realize that if this was just my fate – something unavoidable – then it’s actually easier to come to terms with it.
She credited her mother with noticing the early signs that led her to seek help, explaining, “It really took my mum pointing out that their legs weren’t moving correctly for me to take action.”
My mum always worries, and at first I just figured she was being her usual self. But I started to notice their legs moving less and less, until eventually they stopped completely.
That’s why early detection and treatment, starting at birth, are so crucial.
Jesy explained she decided to share her story widely to raise awareness, as that was her main goal.
If I had seen someone else’s video beforehand, I might have been able to stop this if I’d noticed the problem early on.
I could have handled this situation on my own, but I also feel a responsibility, given my public platform, to bring attention to it.
I’m hesitant to even say this, but it feels wrong to keep it secret when it could potentially save a child’s life. I feel I need to share this with everyone.
I feel like I could have prevented those injuries, and I doubt I’ll ever fully recover from this. However, I’m determined to do everything I can to improve things and prevent it from happening again.
This news follows reports that Jesy Nelson has ended her engagement with Zion Foster, shortly after sharing that their eight-month-old twin daughters were diagnosed with Spinal Muscular Atrophy (SMA).
The couple, a 34-year-old singer and a 26-year-old rapper, announced they are ending their romantic relationship, but will continue to co-parent their children together. They became engaged in September 2025 after dating for three years.
A source said: ‘She and Zion remain friends and are fully focused on their daughters.’
Before speaking to The Sun, their representative stated that the couple’s main focus is the happiness and health of their daughters, and that they are working together as parents.
Okay, so Zion just posted on Instagram, and honestly, I’m wrecked in the best way. He shared this poem he wrote himself – it’s all about accepting things as they are, and you can just feel how much it means to him as he navigates life with his daughters and their condition. And he just…he had to shout out Jesy as a mom, saying how amazing she is. It’s so raw and real, and I’m seriously living for it. He’s just so open and honest, and it makes me adore him even more.
He remembered the doctors saying he likely wouldn’t be able to walk or talk, and might not even be able to lift his head. That’s what he and Jesy were told – it was Spinal Muscular Atrophy Type 1.
‘And it became so clear, doctors only go near what they can measure, so what’s certain?
I cherish your smiles, fleeting and genuine like beautiful sunsets. Hearing you talk, even just silly chatter, feels like the sweetest music. It makes me question though – when I constantly try to shape you into who I want you to be, am I truly loving you, or just trying to soothe my own anxieties?
If I love and accept you completely, exactly as God made you, without wanting you to change at all, am I truly showing you love and acceptance?
He asked Story if she was alright, and Ocean how she was feeling. He said he could hear their resilience in their tears, describing them as two little fighters who already knew how to be strong.
I’m not really concerned with hitting certain life goals or rushing things. My real concern is more subtle, more profound. It’s simply about fully accepting and loving you as you are, just as you are, without any expectations.
‘No matter what tomorrow brings, and no matter what yesterday was.’
He wrote a caption praising Jesy for bringing attention to the fact that England doesn’t routinely screen newborns for Spinal Muscular Atrophy Type 1.
He shared a message saying everyone is connected, and praised Jesy for bravely highlighting a major problem with the healthcare system, calling her a role model.
The current situation is unacceptable and must be improved. Now that effective treatments exist, all newborns in the UK should be tested for Spinal Muscular Atrophy (SMA).
Honestly, seeing the SMA community, and everyone else facing their own tough battles, embrace us… it means the world. You’ve not just accepted us, but you’ve been in our corner, fighting with us every step of the way. I’m so grateful for all of you, seriously!
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2026-01-20 17:07