Jesy Nelson Says Twin Daughters Diagnosed With Rare Genetic Condition

Former Little Mix star Jesy Nelson has revealed that her twin daughters have been diagnosed with a rare genetic condition that doctors say may leave them unable to walk.

In an emotional video shared with fans, the 34-year-old singer spoke candidly about the months-long journey that led to the diagnosis of spinal muscular atrophy type 1, a severe muscle-wasting disease that affects breathing, swallowing, and movement.

Nelson, who gave birth prematurely to Ocean Jade and Story Monroe last May with partner Zion Foster, said the diagnosis followed weeks of uncertainty, repeated appointments, and growing concern about her daughters’ development.

The Early Signs Doctors Missed

Nelson explained that the first warning came from her mother, who noticed the babies were not moving their legs as expected. At the time, Nelson said she dismissed the concern after being repeatedly told that premature babies reach milestones later.

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Health visitors initially reassured the family that the twins appeared healthy. Over time, however, feeding became more difficult. Nelson said the girls fed less frequently and struggled to gain strength, prompting repeated visits to the GP.

Despite raising concerns, she said she was advised to continue trying small feeds. Only after months of appointments did specialists intervene. The twins were eventually assessed at Great Ormond Street Hospital, where doctors delivered the devastating diagnosis.

Nelson said clinicians told her that the girls were unlikely to walk and may never regain neck strength. She was also warned that without treatment, children with SMA type 1 rarely live beyond the age of two.

Life With SMA And Urgent Treatment

Doctors moved quickly once SMA was suspected. Nelson said she and Foster signed consent forms before a final diagnosis because time mattered. The treatment aims to stop further muscle loss but cannot restore muscles already damaged.

SMA affects the motor neurons that control voluntary movement. As those neurons fail, muscles weaken and waste away. Breathing muscles often weaken first, making the condition life-threatening.

Nelson said her daughters have now received treatment, which she described as life-saving. She added that without it, they would not survive.

Since the diagnosis, hospital visits have become routine. Nelson said she has learned to manage breathing equipment and provide medical care at home. She described the experience as overwhelming and said no parent should have to learn such skills under these circumstances.

Why Early Screening Could Change Everything

Nelson said she chose to speak publicly to raise awareness about early detection. She explained that SMA can often be identified at birth through a simple heel-prick blood test.

In countries where newborn screening includes SMA, babies can receive treatment before symptoms appear. Nelson said those children often go on to walk and live far more independent lives.

In the UK, SMA screening is not part of routine newborn testing unless a sibling already has the condition. Campaigners argue that this delay costs children critical muscle function.

Charity SMA UK has long called for SMA to be added to the national blood spot test. The organisation estimates that dozens of babies are born with the condition in the UK each year.

A gene therapy known as Zolgensma is available through the NHS, but specialists stress that timing determines its effectiveness.

Nelson said she is still processing the loss of the future she imagined for her children. She described the experience as grieving while learning to be grateful at the same time.

She added that she believes her daughters can still defy expectations with the right support. Her message to parents was clear. If something feels wrong, push for answers quickly. Time, she said, can save a child’s life.