Jesy Nelson Reveals Twins Diagnosed With Rare Disease

Jesy Nelson, the former Little Mix star, has revealed the devastating news that her eight-month-old twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with spinal muscular atrophy (SMA) Type 1, a rare and incurable muscle-wasting disease. In a heartfelt video posted to social media on January 4, 2026, Nelson described the emotional turmoil of the past several months, sharing her hopes, fears, and the urgent need for greater awareness and early detection of this life-altering condition.

The twins, born prematurely at 31 weeks in May 2025 after a high-risk pregnancy, had initially been described as “healthy and fighting strong.” However, as the months went by, Nelson’s mother noticed the babies were not moving their legs as much as expected. “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be,” Nelson recounted in her video, according to National World. At first, Nelson was reassured by healthcare professionals that the twins’ delayed development was due to their prematurity, a common occurrence for babies born early. “From the minute I left NICU, I was told, ‘Your babies are premature, so do not compare your babies to other babies. They won't reach the same milestones. Take them as they are and they will get to where they need to be when they do,’” she explained, as reported by Global’s Big Top 40.

But as time passed, other symptoms became apparent. The twins struggled with feeding, which prompted Nelson to seek further medical advice. “There were a few signs later on that the girls were struggling to feed properly. We would take them to the GP and say, ‘Our babies are not feeding as frequently as they should.’ They said it was fine and to try little and often,” Nelson shared, according to National World. Despite these reassurances, Nelson persisted, and after “the most gruelling three, four months, and endless appointments,” the twins were diagnosed with SMA Type 1 at Great Ormond Street Hospital.

Spinal muscular atrophy, as described by the NHS and cited by Nelson, is a rare genetic condition that can cause muscle weakness and gets progressively worse over time. SMA Type 1 is the most severe form and, without treatment, most affected babies do not live past the age of two. The disease impacts every muscle in the body, including those needed for breathing, swallowing, and movement. “It stands for spinal muscular atrophy, which can affect—well, it does affect every muscle in the body, down to legs, arms, breathing, swallowing. And essentially what it does is, over time, it kills the muscles in the body and if it's not treated in time, your baby's life expectancy will not make it past the age of two,” Nelson explained in her video, as reported by Global’s Big Top 40.

Although the twins received rapid treatment once SMA was suspected, the timing of their diagnosis meant that much of the damage had already been done. “When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled,” Nelson said, according to National World. The treatment, which involves replacing the missing gene responsible for the disease, can halt further muscle loss but cannot restore muscles that have already been lost. “When they get the treatment, essentially what it does is it puts the gene back in the body that they don't have, and it stops any muscles that are working from dying. But ones that have already gone cannot be regained. There is no cure for SMA, there's only treatment that can help,” Nelson explained, as per Global’s Big Top 40.

The emotional toll of the diagnosis has been immense. Nelson described the last several months as “the most heartbreaking time of my life,” and said she feels as if her “whole life has done a 360.” She spoke candidly about the grief she feels for the life she imagined with her children: “I am grieving a life I thought I was going to have with my children,” she said, as reported by The Sun and National World. The singer also revealed that she has had to become a nurse to her daughters, managing their breathing machines and performing care that “no mother should have to do to their child.”

Despite the challenges, Nelson expressed gratitude that her daughters received treatment in time to save their lives. “Thankfully the girls have had their treatment which I’m so grateful for. If they didn’t have it they would die,” she said, according to National World. She remains hopeful that, with the right help, her daughters will “defy the odds and fight this.”

Nelson’s story has highlighted the critical importance of early detection and screening for SMA. She explained that in some countries, newborns are routinely screened for SMA with a simple heel prick test, allowing for much earlier intervention and, in many cases, the prevention of severe symptoms. “The main thing I want to get across here is that, you know, this can, majority of this can be prevented if it's detected from birth and all it takes is a heel prick. It's not in this country, there are many countries where it is tested at birth with just a simple heel prick. And I don't think anyone understands like how much this can change your child's life,” she said, as reported by Global’s Big Top 40.

Currently, newborn screening for SMA is not standard practice in the UK, although a two-year pilot program is set to begin in Scotland in 2026. Campaigners and experts, including Portia Thorman from SMA UK, are urging for the introduction of nationwide screening. “I think facing a diagnosis now, you can be filled with hope,” Thorman stated, according to The Sun.

Nelson also offered advice to other parents, urging them to seek medical attention if they notice signs such as “floppiness,” inability to sit up without support, frog-like leg positioning, bell-shaped bellies, or rapid tummy breathing in their babies. “But if anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital because time is of the essence and your child will need treatment. And the quicker you get these, the better their life will be. Thank you for listening guys,” she concluded, as reported by Global’s Big Top 40.

Nelson’s openness has sparked an outpouring of support from fans, friends, and fellow celebrities. Her fiancé, Zion Foster, who proposed in September 2025, shared a message of hope and love, posting a new photo of the twins and writing, “Daddy loves you so much.” Former partner Chris Hughes called Nelson “a warrior,” and Love Island’s Shaughna Phillips sent “positive prayers.”

The couple’s journey through a complicated pregnancy—marked by a diagnosis of twin-to-twin transfusion syndrome (TTTS), surgery, and a ten-week hospital stay—has been documented in a six-part Amazon Prime series, offering an intimate look at their struggles and resilience. “Letting the cameras in wasn’t an easy decision for us as it’s such a deeply personal time but I knew I wanted to tell my story in my own words,” Nelson shared on Instagram, as reported by The Sun.

As Nelson and Foster adjust to their new reality, their story stands as a powerful call for awareness, early diagnosis, and support for families affected by rare diseases like SMA. Their courage in sharing their journey may help countless others recognize the signs and seek help in time.