Jesy Nelson Shares Heartbreaking Diagnosis: Twin Daughters Face Lifelong Challenges from Rare Genetic Condition

By Sarah Mitchell, Health and Entertainment Correspondent

London, UK – January 5, 2026

Former Little Mix star Jesy Nelson has opened up about a devastating family health crisis, revealing that her eight-month-old twin daughters have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1), the most severe form of a rare genetic neuromuscular disorder. In an emotional Instagram video posted on January 4, the 34-year-old singer fought back tears as she detailed the prognosis, including the likelihood that Ocean Jade and Story Monroe Nelson-Foster may never walk.

nme.com

entertainmentdaily.com

Nelson, who welcomed the twins prematurely on May 15, 2025, with fiancé Zion Foster, 27, described the past months as “the most heartbreaking time of my life.” The girls were born at 31 weeks following complications from twin-to-twin transfusion syndrome (TTTS), spending weeks in the Neonatal Intensive Care Unit (NICU). Initial concerns arose when Nelson’s mother noticed reduced leg movement, followed by feeding difficulties. Despite reassurances that prematurity might delay milestones, persistent symptoms led to assessments at Great Ormond Street Hospital.

gettyimages.com

7,748 Great Ormond Street Hospital Stock Photos, High-Res Pictures …

“After the most gruelling three, four months and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA Type 1,” Nelson explained. She quoted doctors: “We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled.” Untreated SMA1 dramatically shortens life expectancy to around two years, as it progressively weakens muscles essential for movement, breathing, and swallowing.

ucpcleveland.org

Disability Spotlight: Spinal Muscular Atrophy (SMA) – United …

Grateful for swift treatment access—including potential gene therapy like Zolgensma, approved on the NHS—Nelson emphasized: “Thankfully, the girls have had their treatment… If they don’t have it, they will die.” She has adapted to intensive caregiving, learning to use breathing machines and describing hospital visits as her “second home.” “I am grieving a life I thought I was going to have with my children,” she admitted, yet remained hopeful: “I truly believe that my girls will defy all the odds.”

irishmirror.ie

people.com

Nelson shared the news to raise awareness, urging parents to watch for signs like floppiness, bell-shaped chests, or rapid breathing. She advocated for adding SMA to the UK’s newborn heel-prick screening test, noting that early detection allows treated babies to often achieve normal development, including walking. Currently, routine screening is limited, though Scotland launched a pilot in 2025. Charities like SMA UK echo her call, highlighting transformative NHS-approved treatments since 2019.

Foster supported by resharing the video and posting a photo of the smiling twins, captioning: “Still smiling through all the challenges.” Fans and celebrities flooded with support, praising Nelson’s bravery.

Nelson’s journey from Little Mix fame—leaving in 2020 for mental health reasons—to motherhood has been public. Her vulnerability resonates, turning personal pain into advocacy for affected families.

As treatments advance, stories like this spotlight hope amid hardship, reminding of early intervention’s power.