Little Mix star Jesy Nelson opens up about SMA Type 1 diagnosis affecting her twin daughters

Jesy Nelson has shared an emotional health update about her twin daughters, revealing that the eight-month-old girls have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe neuromuscular condition.

In a video posted to Instagram on Sunday, the former Little Mix singer explained that her daughters, Ocean Jade and Story Monroe, whom she shares with her fiancé Zion Foster, were diagnosed after months of medical tests and specialist appointments.

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Nelson, 34, said concerns first arose when she noticed that the twins were not moving their legs as much as expected and were struggling to feed properly. The girls were born prematurely at 31 weeks in May 2025, and Nelson said she had initially been advised not to compare their development with other babies.

“After months of appointments and endless tests, we were told they have a severe muscular disease called SMA Type 1,” she said in the video, becoming visibly emotional as she described receiving the diagnosis.

Nelson shared that doctors warned the condition could mean her daughters may never walk or regain full neck strength, adding that treatment was required immediately. She explained that SMA Type 1 is the most severe form of the condition and can significantly reduce life expectancy if left untreated.

“It is the most severe muscular disease that a baby can get,” she said, noting that her daughters have since received treatment, something she believes saved their lives.

The singer also spoke about the realities of caring for her children following the diagnosis, explaining that she has had to learn medical procedures typically carried out by healthcare professionals, including using breathing machines to support them.

“The last few months have been the most heartbreaking time of my life,” Nelson said, adding that she feels she has had to grieve the life she once imagined for her family.

Despite the challenges, she said she remains hopeful about her daughters’ future. “I truly believe that my girls will defy all the odds and, with the right help, they will fight this,” she said.

Nelson said she chose to share the update publicly to encourage parents to seek medical advice if they notice similar symptoms in their children, stressing that early diagnosis is crucial. Foster later reshared the video on his Instagram Stories, posting a photo of the twins and expressing his support.

Aasiya Niaz