Jesy Nelson became emotional during an appearance on This Morning, revealing difficult news about her twin daughters’ muscle disease. It was her first television interview since they received the diagnosis.
Perrie Edwards, formerly of Little Mix, shared on Sunday that her two daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). She described the past three to four months as incredibly difficult while getting the diagnosis for her children, who she shares with her fiancé, Zion Foster.
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 effects, as stated by the NHS.
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 meet their complicated medical needs, and she opened up about the biggest challenges she’s faced since their diagnosis.
Jesy became very emotional as she spoke about her daughters, explaining that doctors have said they likely won’t walk or develop full neck strength, and will probably need wheelchairs for the rest of their lives.
I’ve heard many stories of parents being told their children will achieve great things, and then they do! I think it’s about believing in that possibility and making it happen.
They’re still so happy and supportive of each other, which I’m really thankful for. It would be so much harder if they were going through this alone, but as twins, they have each other’s support.
‘My whole life has just completely changed. If you came to my house, it looks like a hospital.
My hallway is completely overflowing with medical supplies, and it’s really strange how quickly things can change from one situation to another.
Story needs a breathing machine at night because she can’t breathe well on her own while she sleeps. They also use a special machine to help her cough, and I have to insert feeding tubes to clear fluids from her chest.
Finding out about this has been really fast – just a few days after the diagnosis – and it’s a lot to handle on top of everything else that’s going on. I’m still trying to process what happened and be there for my kids.
I’m honestly still finding it difficult. What really bothers me is that I want to be a mother to them, not a caregiver providing medical assistance.
‘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 explained, ‘I recognized everything that was happening even before I understood what SMA was.’
Leaving the NICU really drove home the point that I shouldn’t compare my baby to others. Because they were born prematurely, they wouldn’t necessarily reach milestones at the same time, and that was okay – I needed to accept them as they were.
When I first brought the babies home from the NICU, my only focus was on basic things – checking their temperature and making sure they were still breathing. I wasn’t worried about things like whether their legs were moving.
It’s frustrating to realize that if this was just my fate, something I couldn’t change, then it’s actually simpler to come to terms with it.
She credited her mother with noticing the early warning signs, explaining, ‘My mum pointed out that their legs weren’t moving correctly, which finally made me seek help.’
My mum always worries, and at first I just figured she was being her usual self. But I started noticing my grandparents were moving their legs less and less, until eventually they stopped altogether.
That’s why early detection and treatment, starting at birth, are crucial.
I was so moved when Jesy finally opened up about why she decided to share her story. She explained she really wanted to reach as many people as possible and raise awareness – that was her main goal, and it meant a lot to me to hear her say it.
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 probably 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 possibly save a child’s life. I’m going to make sure everyone knows about it.
I feel like I could have prevented those injuries, and I doubt I’ll ever fully recover from this. Still, I’m determined to do everything I can to improve things and prevent it from happening again.
Jesy recently told her fans she’s working to make newborn screening for Spinal Muscular Atrophy Type 1 (SMA1) standard practice. She believes that if her twin daughters had been diagnosed and treated earlier, they might have avoided serious health problems related to the condition.
As a lifestyle expert, I often talk about maintaining strength and mobility, and it’s heartbreaking when those things are affected by illness. This particular condition is a genetic disease where the nerves that control your muscles gradually break down. Over time, this leads to increasing muscle weakness and loss, making everyday movements more and more difficult.
It broke my heart listening to Jesy talk about her condition. She explained that it impacts absolutely everything – every single muscle, from your legs and arms to even breathing and swallowing. The really scary part is, over time, it actually destroys those muscles. It’s just devastating to hear.
The singer recently shared a health update and announced she’s started a petition to require all newborns to be screened for Spinal Muscular Atrophy (SMA). She says she’s committed to getting the petition approved and making this screening standard practice.
Okay, so I’ve been researching Spinal Muscular Atrophy type 1 – SMA1 – obsessively, and it’s incredible! If you can catch it super early, like right after birth, before any symptoms even show up, it can basically be stopped. Seriously! So many kids who get treatment that early end up with hardly any problems, or even no symptoms at all! It’s just…amazing. It gives you so much hope!
In a new video posted to Instagram from the hospital, Jesy thanked everyone for their incredible support and kind messages, both for her and for other families facing a difficult diagnosis. She expressed her sincere gratitude from the bottom of her heart.
I’m incredibly touched by all the support I’ve received. Thank you so much to everyone who watched, shared, and took the time to send such kind messages – I really appreciate it.
I’m starting a petition to include a heel prick test at birth as part of newborn screening, and I’m really committed to making this happen. I’m prepared to work hard to get it added to the standard screening process.
I’m still waiting to hear back about everything, but I’ll let you know as soon as I do. I’m also going to be on This Morning tomorrow to talk about my daughters. I appreciate all your love and support so much – it means the world to me. We still have a journey ahead, but I’m sending you all my love.
Jesy shared on Sunday that doctors at first didn’t worry when her premature twins were slow to reach certain developmental stages, assuming it was due to their early birth.
In a heartfelt Instagram video, she shared that her mother was the first to notice the twins weren’t moving their legs as much as expected.
Jesy took the children to the doctor to address some concerns, and regular health check-ups had also been completed.
She shared that a few months prior, her mother had observed the girls weren’t moving their legs as actively as expected.
I wasn’t worried at the time. Right after leaving the NICU, I was repeatedly told that because my babies were born early, I shouldn’t compare them to other children. They would develop at their own pace and reach milestones when they were ready, so I just needed to accept them as they were.
Health visitors helped ease Jesy and Zion’s worries about how they were feeding their baby.
Despite their concerns, they were assured the babies were doing well and were perfectly healthy.
After later undergoing further tests, they were given the SMA Type 1 diagnosis.
Fighting back tears, the singer shared in a video that without prompt treatment, her baby wouldn’t be expected to live past the age of two.
She explained that doctors at Great Ormond Street Hospital have advised that the girls will likely have permanent disabilities, including an inability to walk or fully control their neck muscles.
She added: ‘The best thing we can do right now is get them treatment and hope for the best.’
Jesy welcomed her twin daughters with partner Zion on May 15, 2025.
She had a challenging pregnancy and spent a lot of time in the hospital. Her twin daughters were born prematurely at 31 weeks and needed to stay in the neonatal intensive care unit (NICU) afterward.
After a difficult three or four months filled with many doctor’s appointments, my daughters have finally been diagnosed with a serious muscle condition called Spinal Muscular Atrophy Type 1 (SMA Type 1), she shared in a video.
Jesy explained that the twins received treatment quickly, which is crucial for Spinal Muscular Atrophy (SMA). Unfortunately, there’s currently no cure for the condition, but prompt treatment is vital.
I’m incredibly thankful for the treatment the girls have received over the last few weeks. It’s truly a lifesaver – without it, the outcome would be devastating.
There have been so many hospital visits lately, it feels like I’m living there. I’ve ended up having to learn medical tasks, like operating breathing machines for my child – things no parent should ever have to do.
Oh my god, hearing Jesy talk about the last few months just destroyed me. She said it’s been the most heartbreaking time of her life, and honestly, you could just feel her pain. She explained it felt like everything flipped upside down, a complete 360, and it’s like she’s mourning the future she always imagined – the life she thought she’d have with her kids. It’s just… so incredibly sad. I’m absolutely gutted for her.
I’m confident that with the right support, my daughters will overcome any challenge and achieve incredible things.
She concluded her video by sharing that her goal was to help others and increase understanding of early diagnosis in children. She highlighted key signs to watch for, such as unusually floppy babies, swollen bellies, and fast breathing.
She emphasized the importance of the newborn heel prick test, explaining it could prevent serious health problems and even save a baby’s life.
Ocean Jade and Story Monroe arrived early, at 31 weeks, after their mother, Jesy, was diagnosed with twin-to-twin transfusion syndrome (TTTS). This uncommon condition can be dangerous for one or both babies in a twin pregnancy.
Before going home, the twins had been cared for in the hospital’s Neonatal Intensive Care Unit (NICU).
Jesy recently shared that nothing can truly prepare a parent for the experience of having a baby in the NICU, after their own children were born prematurely.
In March 2025, while pregnant, Jesy experienced complications that required emergency treatment. Doctors advised her to stay in the hospital until she was at least 32 weeks pregnant.
Looking back on everything, Zion and I really connected during that difficult time. It was a challenging experience, especially with being seven months pregnant, but it brought us closer together and helped us understand each other in a way we hadn’t before. We definitely grew as a couple.
Jesy revealed in January 2025 that she and her boyfriend, Zion, were expecting twins, despite previous rumors of a breakup.
This Morning airs weekdays from 10am on ITV1 and ITVX
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2026-01-07 18:51