Jesy Nelson Reveals Twins Diagnosed With Rare Disease

Jesy Nelson, the former Little Mix singer, has revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) type 1—a rare and devastating genetic condition. In an emotional Instagram video posted on January 4, 2026, Nelson shared the heartbreaking news with her 9.6 million followers, describing the last three to four months as "the most heartbreaking time of my life."

The twins, born prematurely on May 15, 2025, with her partner Zion Foster, arrived at just 31 weeks following a pregnancy marked by rare complications, including pre-Twin-to-Twin Transfusion Syndrome (TTTS). Nelson spent ten weeks in the hospital before their birth, and after delivery, the girls endured a four-week stay in the Neonatal Intensive Care Unit (NICU). Reflecting on that time, Nelson wrote on Instagram, "Nothing or no one will ever be able to prepare you as a parent for NICU. It’s the most scary, overwhelming feeling of emotions, not being able to feel like you can protect your babies."

Concerns about the twins' health began when Nelson's mother noticed that their legs "weren’t moving as much as they should be." Both parents also observed that the girls were struggling to feed properly. Initially, health visitors and general practitioners reassured them that, as premature babies, the twins might hit milestones later than usual. However, after "endless appointments" and a "gruelling three or four months," the family received a diagnosis at Great Ormond Street Hospital in London: both girls had SMA type 1.

Nelson explained the gravity of the diagnosis, calling SMA type 1 "the most severe muscular disease that a baby can get." As she detailed in her video, "It does affect every muscle in the body, down to legs, arms, breathing, swallowing. Essentially, what it does is, over time, it kills the muscles to the body, and if it's not treated in time, your baby's life expectancy will not make it past the age of two." According to the NHS and SMA UK, SMA is a progressive muscle-wasting disease that can cause death within two years if left untreated.

Doctors at Great Ormond Street Hospital told Nelson and Foster that their daughters would "probably never be able to walk" and "probably will never regain their neck strength, so they will be disabled." Nelson recounted, "I practically feel like the hospital has become my second home. I also feel like I have almost had to become a nurse in the space of two weeks of getting their diagnosis because I have to put them on breathing machines and do lots of stuff that no mother should have to do with their child." She continued, "I literally feel like my whole life has done a 360. I almost feel like I am grieving a life I thought I was going to have with my children."

Despite the dire prognosis, the twins have begun receiving treatment. Nelson expressed profound gratitude that her daughters were able to access therapy in time, stating, "Thankfully the girls have had their treatment, which I’m so grateful for because if they don’t have it, they will die." The urgency is underscored by the fact that, with SMA type 1, 95% of motor neurons can be destroyed before the age of six months. The earlier the treatment, the better the outcome, as irreversible damage can occur rapidly.

In the UK, a gene therapy drug called Zolgensma was approved by the NHS in 2021 to treat babies with SMA. This drug delivers a healthy copy of the affected gene to the body, but timing is critical. According to SMA UK, the window for effective intervention is narrow, and irreversible damage may already have occurred in the nervous system by the time symptoms appear. Currently, screening for SMA is only performed on newborns with a sibling who has the condition. Campaigners and medical experts are pushing for SMA to be included in the newborn blood spot test—a simple heel-prick test already used to screen for other rare but serious conditions.

Nelson is now using her platform to raise awareness about the importance of early detection. "The main thing I want to get across is that the majority of this can be prevented if it is detected from birth and all it takes is a heel prick," she said. She highlighted warning signs, such as floppiness in babies, bell-shaped bellies, and rapid breathing, urging parents and healthcare providers to be vigilant. "I wanted to share the diagnosis to help other children to get diagnosed as fast as possible," she added.

The emotional toll on Nelson and Foster has been immense, but both parents remain hopeful. Nelson told her followers, "I truly believe my girls will defy all the odds, and with the right help, they will fight this and go on to do things that have never been done." Foster echoed this sentiment by posting a smiling image of the twins with the caption: "Still smiling through all the challenges. Daddy loves you so much."

Statistics from SMA UK estimate that about 47 babies were born with SMA in the UK in 2024. The genetic nature of the disease means that approximately one in 40 people carry the altered gene responsible for SMA. Children are born with the condition if both parents are carriers. Prior to recent advances in treatment, babies with SMA type 1 often did not survive past their second birthday, and those with milder forms faced lifelong disability and frequent medical complications.

Nelson’s openness about her experience has resonated widely, with many praising her courage and determination to shed light on a rare disease that too often goes undetected until it is too late. Her story not only highlights the challenges faced by families dealing with rare genetic conditions but also underscores the urgent need for policy changes in newborn screening and early intervention.

As Nelson and Foster continue to navigate the uncertainty and heartbreak of their daughters’ diagnosis, they remain focused on hope, advocacy, and the belief that their girls can "defy all the odds." For families affected by SMA and other rare diseases, their journey shines a much-needed spotlight on the power of early diagnosis, the importance of accessible treatment, and the resilience of the human spirit.