Jessica Louise Nelson, professionally known as Jesy Nelson, was born on 14 June 1991 in England. She rose to fame as a member of the girl group Little Mix, which was formed during the eighth series of The X Factor in 2011. As part of Little Mix, Nelson achieved remarkable success, with seventeen top-ten singles and five number-one hits on the UK Singles Chart. The group became known not only for their catchy music but also for their empowering messages and dynamic performances. In 2019, Nelson released a documentary titled Jesy Nelson: Odd One Out, which explored her struggles with body image, mental health, and the effects of online bullying. The documentary was widely praised, winning the Factual Entertainment Award at the 25th National Television Awards and the Visionary Honour Award for Documentary of the Year.
Nelson’s personal life, as well as her decision to leave Little Mix in 2020, has been under intense media scrutiny in the UK. In October 2021, she released her debut solo single, Boyz, featuring rapper Nicki Minaj, which debuted at number four on the UK Singles Chart despite receiving mixed reviews. She followed this with her single Bad Thing in April 2023. While her musical career has had its ups and downs, Nelson has often used her platform to speak openly about challenges she has faced, particularly around mental health and personal resilience.
Recently, Nelson shared heartbreaking news about her twin daughters, Ocean Jade and Story Monroe, who are now eight months old. In an emotional video posted to Instagram, Nelson revealed that the girls had been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe genetic condition that affects muscle strength and motor function. The announcement came after “the most gruelling three or four months” of hospital appointments and assessments following the twins’ premature birth.
The twins were born at just 31 weeks on 15 May 2025, after a difficult pregnancy that required Nelson to spend significant time in hospital. From the early days, both Nelson and her partner, Zion, noticed that their daughters were struggling with feeding and movement. Initially, health visitors and doctors reassured them that delays in development were common for premature babies and advised not to compare their progress to other children. However, concerns persisted, and it was Nelson’s mother who first observed that the twins were not moving as much as expected, prompting further investigation.
After months of worry and countless hospital visits, the twins were diagnosed with SMA Type 1 at Great Ormond Street Hospital in London. SMA is caused by a mutation in the SMN1 gene, which is responsible for producing a protein critical for the health of motor neurons. Without this protein, nerve cells in the spinal cord degenerate, and the muscles that rely on them for movement begin to weaken and waste away. In Type 1 SMA, the disease is particularly aggressive, often affecting the legs, arms, breathing, and swallowing. Without treatment, most infants with SMA Type 1 have a life expectancy of less than two years.
Nelson explained in her video that the diagnosis was devastating. She described the physical impact of the disease, noting that it “affects every muscle in the body down to legs, arms, breathing and swallowing” and that over time it essentially kills the muscles. Despite the severity, Nelson emphasized that early treatment could save lives. The twins have already begun treatment at Great Ormond Street Hospital, a process that must be carried out urgently, as delays in care can have life-altering consequences. Although the treatment offers hope, doctors have informed Nelson that her daughters are unlikely to walk or regain full neck strength and will live with disabilities.
Reflecting on her experience, Nelson shared the emotional toll of the past months. She described countless hospital visits and procedures, saying that she often feels like a nurse as she helps manage breathing machines and medical routines that no parent should ever have to perform. She called this period “the most heartbreaking time” of her life and admitted to grieving the life she had envisioned with her children. Despite the challenges, Nelson expressed hope, saying she believes her daughters will defy the odds with the right medical care and support.
Nelson also highlighted the importance of raising awareness about SMA. She encouraged parents to be alert for early signs in infants, including floppiness, poor muscle tone, rapid breathing, and difficulty holding up the head. Early detection is crucial, as treatments are most effective when started within weeks or days of birth. She stressed the need for newborn screening for SMA, which is not currently part of the standard heel-prick blood test in the UK. If included, such testing could allow children to receive treatment in time to prevent severe disability and improve their quality of life.
SMA affects approximately one in every 6,000 to 10,000 births worldwide, and around one in 40 people are carriers of the faulty SMN1 gene. Historically, infants with SMA Type 1 rarely survived beyond their second birthday, while those with Type 2 often never learned to walk and faced a lifetime of medical challenges, including surgeries and respiratory infections. In recent years, however, new therapies have been developed that can halt the progression of the disease if administered early, transforming what was once a fatal diagnosis into a treatable condition, provided treatment begins promptly.
Nelson’s decision to go public with her daughters’ diagnosis reflects her desire to help other families and raise awareness about early intervention. She hopes that sharing her story will encourage parents to seek medical advice if their infants show signs of muscle weakness or developmental delays. She also wants to highlight the urgent need for policy changes around newborn screening in the UK, which could dramatically improve outcomes for children affected by SMA.
Through her music, documentaries, and now her personal journey as a mother, Jesy Nelson has continued to demonstrate resilience and advocacy. Her openness about mental health, personal struggles, and now her daughters’ health challenges paints a picture of a woman using her platform to shed light on issues that deeply affect families. While the coming months will undoubtedly be challenging, Nelson’s determination to fight for her daughters and raise awareness about SMA reflects both her strength as a parent and her commitment to helping others navigate similar challenges.
Jesy Nelson’s story is a powerful reminder of the fragility and resilience of life, the importance of early medical intervention, and the profound love and determination of a parent fighting for her children. As she navigates this difficult chapter, her voice continues to inspire awareness, hope, and empathy for families facing rare medical conditions.
