Jesy Nelson has shared the most heartbreaking update of her life, revealing that her twin daughters have been diagnosed with the rare genetic condition Spinal Muscular Atrophy (SMA) — a disease that doctors warned could mean they may never walk.
The former Little Mix star, 34, welcomed twins Ocean Jade and Story Monroe Nelson-Foster with her fiancé Zion Foster in May, following a high-risk and emotionally draining pregnancy. Now, just eight months later, Jesy has told fans that her life has been turned upside down.
In an emotional Instagram video, Jesy struggled to hold back tears as she admitted she is “grieving a life I thought I was going to have with my children.” She explained that SMA affects every muscle in the body, leading to severe weakness, breathing difficulties and problems with swallowing.
Jesy revealed that she has effectively become a nurse to her own babies, saying she is now putting her daughters on breathing machines and doing things “no mother should ever have to do with their child.”
The singer said concerns were first raised when her mum noticed the twins were not moving their legs as much as expected. Initially, Jesy was reassured that their development would be slower because they were born prematurely. She was repeatedly told not to compare them to other babies and that everything was fine.
But over time, worrying signs appeared. The twins began struggling to feed properly, and despite multiple GP visits, Jesy was reassured again that it was normal. After months of relentless appointments and pushing for answers, the devastating diagnosis finally came: SMA Type 1 — the most severe form of the condition.
Jesy explained that without treatment, babies with SMA Type 1 often do not live past the age of two. She said time was critical, describing how quickly everything moved once specialists became involved.
After assessments at Great Ormond Street Hospital, Jesy and Zion were told their daughters would likely never be able to walk, may never regain neck strength, and would live with lifelong disabilities.
“The best thing we can do right now is get them treatment and hope for the best,” Jesy said, adding that without it, her girls would not survive. Thankfully, the twins have now received treatment, something Jesy described as lifesaving.
While there is currently no cure for SMA, new treatments can significantly slow or stop the disease if given early enough. Campaigners, including SMA UK, are pushing for routine newborn screening across the UK, arguing that many diagnoses come too late. Scotland is set to begin a pilot screening programme in 2026.
Jesy admitted the past months have been the most heartbreaking of her life, saying the hospital has become her second home. Despite her pain, she remains hopeful, telling fans she truly believes her girls can defy the odds with the right help.
Support has poured in from fellow celebrities, including Jesy’s ex-partner Chris Hughes, who called her “a warrior” and urged her to be kind to herself. Zion also shared a message of hope, posting a photo of the twins and saying they were “smiling through the challenges,” adding simply: “Daddy loves you so much.”
The devastating news comes after Jesy previously revealed she had filmed a deeply personal documentary series about her pregnancy and early motherhood for Amazon Prime, documenting what she called a new chapter in her life.