Former Little Mix star Jesy Nelson has emotionally revealed that her twin baby daughters have been diagnosed with a rare and life-threatening genetic condition known as Spinal Muscular Atrophy (SMA) Type 1. The singer shared the heartbreaking news in an Instagram video, explaining that doctors have warned her daughters will “probably never walk.”
Nelson welcomed her twin girls, Ocean Jade and Story Monroe Nelson-Foster, prematurely in May last year with her partner, musician Zion Foster. Since then, the family has faced what Nelson described as the most painful months of her life.
What Is Spinal Muscular Atrophy Type 1?
Spinal Muscular Atrophy, commonly referred to as SMA, is a progressive muscle-wasting disease caused by the loss of motor neurons in the spinal cord. As a result, muscles weaken over time, affecting movement, breathing, swallowing, and even head control.
According to Nelson, her daughters were diagnosed with SMA Type 1, the most severe form of the condition. Without early treatment, babies with SMA Type 1 often do not survive past the age of two.
“It affects every muscle in the body,” Nelson explained. “Legs, arms, breathing, swallowing — everything.”
Early Warning Signs and Diagnosis
Nelson said she first became concerned when her daughters did not move their legs as much as expected. In addition, feeding became increasingly difficult. Consequently, doctors began a series of medical assessments.
After months of hospital visits and tests, Ocean and Story were assessed at Great Ormond Street Hospital in London, where specialists confirmed the devastating diagnosis.
“The girls are probably never going to be able to walk,” Nelson said. “They may never regain neck strength, so they will be disabled.”
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Life-Saving Treatment Offers Hope
Despite the severity of the diagnosis, Nelson revealed that her daughters have since received life-saving treatment, which she described as crucial.
“If they don’t have it, they will die,” she said honestly.
One of the most significant breakthroughs in SMA treatment came in 2021, when the NHS approved Zolgensma, a revolutionary gene therapy. The drug delivers a healthy copy of the faulty gene, helping to stop the disease from progressing. However, timing is critical, as nerve damage can become irreversible.
Although Nelson did not specify which treatment her daughters received, she expressed deep gratitude that help was available.
A Mother Turned Caregiver
Since the diagnosis, Nelson has had to take on a medical caregiving role at home. She revealed that she now helps her daughters use breathing machines, acting as a nurse while navigating motherhood.
“The last three months have honestly been the most heartbreaking time of my life,” she admitted. “I feel like my whole life has done a 360.”
Nevertheless, Nelson remains hopeful. She believes her daughters will “defy all the odds” and fight the condition with the right support.
Raising Awareness for SMA Screening
Nelson said she chose to share her story publicly to raise awareness and help other families receive faster diagnoses. Currently, newborn screening for SMA is not routine in the UK unless there is a known family history.
Charity SMA UK has long campaigned to include SMA in the newborn blood spot test, which already screens for 10 rare conditions. According to the charity, around 47 babies were born with SMA in the UK in 2024, while approximately one in 40 people carry the altered gene.
Early screening could dramatically improve outcomes, as treatment works best before symptoms appear.
Support From Family and Fans
After Nelson shared her story, partner Zion Foster reposted her video alongside a smiling photo of the twins, writing:
“Still smiling through all the challenges. Daddy loves you so much.”
Fans and fellow celebrities have since flooded social media with messages of love and support.
Jesy Nelson on Motherhood
Nelson, now 34, previously spoke openly about pregnancy complications after giving birth at 31 weeks. In an Instagram post last October, she said becoming a mother made her realize “how incredible my body actually is.”
The singer left Little Mix in December 2020 and later launched her solo career, releasing Boyz featuring Nicki Minaj in 2021.
Despite the challenges ahead, Nelson remains determined to fight for her daughters — and to help change the future for other children affected by SMA.
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