Former Little Mix star Jesy Nelson has opened up about one of the most challenging chapters of her life, sharing a poignant video of her 8-month-old daughter equipped with a feeding tube amid her twin girls’ diagnosis with spinal muscular atrophy (SMA) Type 1. The 34-year-old singer, who welcomed daughters Ocean Jade and Story Monroe prematurely in May 2025, revealed the devastating news in an emotional Instagram post and subsequent interviews, leaving fans worldwide reeling from the raw glimpse into her family’s struggle. Nelson’s update, posted on January 10, 2026, highlights the daily realities of caring for children with this rare genetic condition, sparking an outpouring of support and calls for better newborn screening in the UK.

The video, shared on Nelson’s Instagram Stories to her 9.7 million followers, captured a tender moment of one of her daughters giggling softly, her tiny face marked by the nasal feeding tube essential for nutrition. “I’m so in love with her little laugh🥺,” Nelson captioned the clip, a simple yet powerful message that contrasted the joy of motherhood with the harsh medical interventions required. This came just days after Nelson appeared on ITV’s “This Morning” on January 4, where she detailed the twins’ diagnosis and the profound impact on her life. “They will probably never walk. They’ll probably never regain their neck strength,” she told hosts Cat Deeley and Ben Shephard, her voice steady but laced with emotion. The revelation has resonated deeply, with fans flooding social media with messages of solidarity, using hashtags like #SMAStrong and #JesyNelsonTwins to rally around the family.

Spinal muscular atrophy Type 1, also known as Werdnig-Hoffmann disease, is the most severe form of SMA, affecting approximately 1 in 10,000 births worldwide. According to medical experts from the Cleveland Clinic and NHS sources, it’s a progressive neuromuscular disorder caused by a mutation in the SMN1 gene, leading to the loss of motor neurons in the spinal cord. Infants with SMA Type 1 typically show symptoms within the first six months, including muscle weakness, difficulty swallowing, and respiratory issues. Without treatment, many do not survive beyond two years, though advancements like gene therapy drugs such as Zolgensma have improved outcomes when administered early. Nelson explained that her daughters’ symptoms emerged gradually: “They were struggling to feed properly. It was getting gradually less and less,” she said on “This Morning.” After months of tests and appointments, the diagnosis was confirmed, thrusting the family into a world of specialized care.

Born at 31 weeks via emergency C-section, Ocean and Story spent their early days in neonatal intensive care, a period Nelson has described as “terrifying.” The singer, who split from Little Mix in 2020 to focus on her solo career and mental health, announced her pregnancy in late 2024 with partner Zion Foster, a musician and producer. The twins’ arrival was celebrated with joyful posts, but the underlying health concerns soon overshadowed the happiness. Nelson has been candid about the adjustments: “Story has to be on a breathing machine at night because she isn’t strong enough to breathe by herself,” she shared. Both girls require cough-assist machines to clear secretions and prevent pneumonia, a common complication. Nelson herself has undergone training to insert feeding tubes, a skill she demonstrated in her update, underscoring the hands-on role she plays in their care.

The entertainment community has rallied around Nelson, with former bandmates Perrie Edwards, Leigh-Anne Pinnock, and Jade Thirlwall sending private messages of support, according to sources close to the group. Edwards, who welcomed her own son Axel in 2021, posted a public tribute on Instagram: “Sending all my love to Jesy and her beautiful girls. You’re the strongest mum I know.” Celebrities like Holly Willoughby and Dermot O’Leary, co-hosts of “This Morning,” praised Nelson’s bravery during her appearance, with O’Leary noting, “It’s every muscle, isn’t it?” in reference to SMA’s widespread effects. Fans have echoed this sentiment, with one commenter writing, “Jesy, your strength is inspiring. Praying for Ocean and Story.” The post has garnered millions of views, amplifying awareness about SMA and prompting donations to organizations like SMA UK and TreatSMA.

Nelson’s advocacy has taken center stage amid the personal turmoil. She’s pushing for routine SMA screening via a simple heel-prick test at birth, which is not standard on the NHS despite being available in many European countries and parts of the US. Joining her on “This Morning” was neurologist Professor Francesco Muntoni, who emphasized the importance of early detection: “If diagnosed at birth, treatments can be life-changing.” Nelson’s campaign echoes similar efforts by other parents, such as Victoria and Gee, who appeared on the show to discuss their daughter Sophia’s SMA journey. Diagnosed shortly after birth, Sophia, now 10, has defied early grim prognoses thanks to timely intervention. “Doctors told us not to expect her to live long,” Victoria recounted, a story that mirrors the fears Nelson faces.

This isn’t Nelson’s first time in the public eye for personal struggles. Rising to fame on “The X Factor” in 2011 with Little Mix, the group became one of the UK’s most successful girl bands, selling over 60 million records worldwide. Hits like “Wings,” “Black Magic,” and “Shout Out to My Ex” defined a generation, but Nelson’s departure in December 2020 was prompted by mental health challenges exacerbated by online trolling and body-shaming. Her 2019 BBC documentary “Odd One Out” delved into these issues, earning acclaim for its honesty. Post-Little Mix, Nelson launched a solo career with tracks like “Boyz” featuring Nicki Minaj, though she’s paused music to focus on motherhood. In a 2025 interview with The Sun, she reflected on her twins’ premature birth: “It was an emergency, but they’re fighters.”

The twins’ names hold special meaning: Ocean Jade honors Nelson’s love for the sea and her middle name, while Story Monroe pays tribute to Marilyn Monroe, a figure Nelson admires for her resilience. Family life with Foster, whom she met in 2022, has been a grounding force. Sources tell Daily Mail that the couple is “united in this fight,” with Foster often sharing glimpses of fatherhood on social media. The family’s home in Essex has been adapted with medical equipment, transforming it into a sanctuary of care.

Broader implications of Nelson’s story have sparked discussions on rare diseases and healthcare equity. Only about 50 children in the UK are born with SMA annually, yet early screening could prevent severe outcomes. Advocacy groups report a surge in inquiries following Nelson’s revelations, with SMA UK’s helpline fielding double the usual calls. Politicians, including Health Secretary Wes Streeting, have acknowledged the push, tweeting: “Jesy Nelson’s courage highlights why we must expand newborn screening.” In the US, where Zolgensma – a one-time gene therapy costing over $2 million – is approved, similar stories from families have led to insurance reforms.

As Nelson navigates this “grueling” period, she’s teased upcoming projects, including a Prime Video series set to launch in March 2026, which may chronicle her journey. For now, her focus remains on her daughters’ treatment, which includes potential access to Spinraza or Evrysdi, drugs that boost SMN protein production. “There’s feeding tubes and making sure they can breathe,” she said, painting a picture of round-the-clock vigilance.

Fans continue to pour in support, from virtual fundraisers to fan art depicting the twins as “little warriors.” International media, from People magazine in the US to The Independent in the UK, have covered the story, emphasizing Nelson’s transition from pop star to advocate. One fan summed it up on Reddit: “Jesy sharing that clip with the feeding tube – it’s heartbreaking but so real.”

In the face of uncertainty, Nelson’s message is one of love and determination. “We’re grateful for the treatments available,” she told Us Weekly. As the world watches, her story serves as a reminder of the fragility of life and the power of vulnerability. Ocean and Story’s fight against SMA is just beginning, but with a mother like Jesy leading the charge, hope remains a constant companion.