Jesy Nelson Steps Out with Twin Daughters After Devastating Diagnosis

Jesy Nelson has stepped out with her twin daughters for the first time since she revealed they'd been diagnosed with a rare neuromuscular disorder. The Little Mix star, 34, shared earlier this month that her eight-month-old babies Ocean and Story had been diagnosed with the rare genetic condition, SMA Type 1, (Spinal Muscular Atrophy), which causes muscle weakness and atrophy. Jesy was supported by her mother Janice as they headed out for a walk in Essex, after it emerged this week that she has also split from her fiancé Zion Foster. The star got engaged to the musician in September, but sources shared on Monday that they're now focused on 'co-parenting' their twin daughters. On Tuesday, Jesy also left Health Secretary Wes Streeting fighting back tears as she emotionally begged for change to the SMA Type 1 testing. Jesy sobbed 'no parent should have to go through this' as she met with the MP to discuss screening children at birth for the rare genetic issue. Jesy opened up on the diagnosis of her twin daughters earlier this month. She took to This Morning to open up on how her daughters could be wheelchair-users for their entire lives, and currently require round-the-clock care. The heartbroken mother previously admitted that if her twins had been diagnosed with the condition earlier, she could have had an opportunity to 'save their legs'. Ocean and Story weren't tested for SMA, because the test is not yet routine for newborns across the UK. The test uses a heel prick to take blood to screen for the condition, and early awareness can help children get vital treatment to manage the symptoms sooner. 'Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms,' according to the NHS website. Since opening up about the diagnoses of her daughters, Jesy has been campaigning for testing to become standard for newborn babies across the country - after it was last ruled out in 2018 by the UK NSC. The UK National Screening Committee are currently reviewing the case again - with the next report on the process to formally adopt the tests within the NHS expected to be in progress until 2028. If SMA1 is treated pre-symptomatically (at or near birth), the disease can be largely prevented, and many children develop with minimal or no symptoms. Meeting with Health Secretary Wes Streeting, Jesy was seen grilling the MP as she explained the importance of the testing. The singer told him: 'So many families have reached out and told me their stories, they have been screaming and shouting about it for many years, it's now had to take what for me to come along, who has a few million followers, to be taken seriously. 'My question is, why did it have to take, for me to come along with a platform for people to take it seriously? 'It's just madness to me that we are living in a day and age now where we have got treatments that are life changing and [SMA] is still not part of the heel prick test. 'There's going to be so many more babies that are gonna be diagnosed, and so many families that are going to have to experience what I'm going through right now when it doesn't need to be happening.' Wes explained: 'That's the pressure I feel, because it could have been so different if you got an earlier diagnosis. 'There's some good news, in terms of screening, there is a live evaluation going on now that will give us, I hope, the evidence base to bring forward what you are calling for. 'That evaluation, which will involve around two thirds of babies, isn't due to report until January 2028 - we're talking two years from now. 'Can we make sure the evaluation involves all babies during the trial period, and secondly, can we bring it forward? That's what they're working on at the moment.' Jesy and Wes went on to have an off-camera discussion during the VT that was played on This Morning, before once again appearing on screen for a second emotional chat. She was seen breaking down in tears after showing Wes a video of a child affected by SMA type 1 in a wheelchair, and left the MP struggling to hold back emotions as he vowed to make changes. Jesy told Wes: 'I know that [the video] really impacted you because it's literally when you see it in real life and you see the severity of how life changing is, it's the case of your child could walk or your child will be in a wheelchair. 'I'm so passionate about trying to raise awareness about this and making the change because I believe that no parent should ever have to go through this.' Wiping a tear from his eye, Wes added: 'I found that video really hard, I find it hard listening to you as well... I found that really hard to watch. 'I'll be honest, I didn't know [about the importance of SMA testing] until your experience and your campaign and the way you've spoken so powerfully and emotionally about your own experience. 'I wasn't aware of the way in which the testing had come along leaps and bounds, and I appreciate people watching will be like, "What the hell? You're the health secretary?" 'But I'll be a dog with a bone on this. I feel hopeful that because this evaluation study is already set up and designed to start. 'I've got two things I really want to go away and drill into. One is, can it start sooner? And secondly, when it's up and running, it's only going to screen two thirds, can we go further on that? 'Those, those are the two things that I want to really drill into, and then report back to you. I feel a responsibility to the whole SMA community as well.' It comes after Jesy reportedly split from fiancé Zion Foster, just weeks after revealing their eight-month-old twin daughters had been diagnosed with SMA. The singer and rapper, who got engaged in September 2025 after three years together, will remain 'united as co-parents' despite ending their romantic relationship. A source said: 'She and Zion remain friends and are fully focused on their daughters.' Before going on to tell The Sun: 'Their priority continues to be the well-being of their daughters. They are fully united in co-parenting.' Taking to Instagram on Thursday, Zion shared a self-written poem centred on acceptance as he comes to terms with the day-to-day reality of seeing his daughters with the condition, as well as praising Jesy as a mum. He read: 'They said it's unlikely you'll walk, you may not be able to talk, probably won't be able to hold your head up, that's what me and Jesy heard - SMA Type 1. 'And it became so clear, doctors only go near what they can measure, so what's certain? 'I watch your smiles like sunsets, not promised, but real. I listen to you babble the sweetest melodies, in the moment it makes me wonder, if I keep telling you who I want you to be, what I want you to do, what I expect from you, am I loving you, or am I loving my fear? 'If I take you for how God knitted you, just as you are, nothing removed, am I loving you? Am I accepting you?' He added: 'Story, is your heart okay? Ocean, how's your mind? I hear strength in your lungs every time you cry, two little warrior girls who already know how to fight. 'Honestly, my worry isn't the milestones, isn't forcing life to live a different way. My worry is quieter than that, deeper. It's about accepting you, loving you for who you are right now, without conditions. 'No matter what tomorrow brings, and no matter what yesterday was.' Captioning the post, he praised Jesy for highlighting England's lack of birth screening for SMA Type 1. He wrote: 'We are all one. Jesy addressing a huge flaw in our healthcare system is the definition of a superwoman. 'Reality is, it’s indefensible and needs to be changed, simple. Test kids at birth for SMA in the UK now that there are revolutionary treatments available. 'Thank you to the SMA community and wider community of those living with more unique challenges for accepting us, supporting us and fighting with us.'