Jesy Nelson shares heartbreaking update as twin daughters face new diagnosis and more surgery
20 July 2026, 11:41
Singer says life with daughters Ocean and Story is a "never-ending" journey as she opens up about fresh health challenges in new documentary.
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Jesy Nelson has shared an emotional update on the health of her twin daughters, revealing that one of the girls has now been diagnosed with scoliosis while both children are preparing to undergo further surgery.
The former Little Mix star, 35, spoke candidly about life with 14-month-old Ocean and Story ahead of the release of her Prime Video documentary Jesy Nelson: Life Changing, describing the family's reality as a "never-ending, life-changing situation."
Jesy announced earlier this year that the twins had been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that causes progressive muscle weakness.
She has previously explained that the condition means her daughters are not expected to walk independently.
Now, the singer has revealed to the Daily Mail the family is facing fresh medical hurdles: Story has been diagnosed with scoliosis, an abnormal sideways curvature of the spine, and is expected to require spinal surgery every six months.
Meanwhile, both girls are due to undergo an operation to change the way they receive nutrition after their feeding tubes began causing discomfort.
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Explaining the decision, Jesy said the tubes had become increasingly traumatic for the twins as they have grown older.
"They're having an operation soon," she explained, adding that the current tubes are "causing so much trauma to their nose and throat." Instead, doctors plan to insert feeding tubes directly into the girls' stomachs.
Discussing Story's additional diagnosis, Jesy said her daughter "is going to have to eventually have an operation on her spine," adding that the procedure will need to be repeated every six months.
The singer became visibly emotional while reflecting on the day-to-day realities of caring for children with complex medical needs, admitting she still finds it difficult to talk about.
"I wish I could say, 'Oh, it's easier now,' but it's not," she said. "It's a never-ending, life-changing situation."
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Jesy explained that one of the main reasons she agreed to document her family's experience was to give viewers a better understanding of what families living with SMA face behind closed doors.
"There's just so much that I don't think people even know goes on," she said. "I wanted to make this documentary because I feel like it only gives a small insight into what families have to go through on a daily basis."
She added that her hope is to help drive change so future families have access to earlier treatment, saying: "I wanted to make change so that no family has to ever go through this again."
Despite the difficult journey, Jesy said she wants Ocean and Story to grow up feeling proud of who they are rather than defined by their diagnosis.
"I want my girls to know that this is their little superpower," she said, adding that she hopes they understand "how brave they are and resilient."
The documentary also captures the family's adjustment following the twins' diagnosis, although Jesy admitted she has struggled to watch it herself.
"I've only watched it once because it's too hard for me to watch," she said, explaining that seeing months of hospital appointments and treatments condensed into a single programme made her realise just how much the family has endured.
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Alongside sharing her personal story, Jesy has become a prominent campaigner for newborn SMA screening across the UK, arguing that earlier diagnosis can dramatically improve outcomes for affected babies.
Her campaigning has already helped raise awareness of the condition, and she recently celebrated confirmation that SMA screening is set to be introduced for newborns across the UK later this year.
For Jesy, the milestone offers hope that other families may face a different future. "It will never not be heartbreaking to hear that your child has SMA," she said. "But to know that their life will not have to look like this is just amazing."
