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Jesy Nelson, the singer and former member of Little Mix, has vowed to tirelessly advocate for newborn screening that includes testing for Spinal Muscular Atrophy (SMA), a rare muscle-wasting condition. Her motivation stems from the recent diagnosis of her seven-month-old twin daughters, Ocean Jade and Story Monroe Nelson-Foster, with SMA. Nelson revealed on ITV’s This Morning that her children “will probably never walk,” and expressed frustration that this debilitating illness is not currently part of the standard newborn screening program.
During her emotional conversation with hosts Cat Deeley and Ben Shephard, Nelson explained how her life has dramatically shifted since learning about her daughters’ diagnosis. She stressed the importance of including SMA in the NHS blood test, typically performed when babies are five days old, which already screens for ten other serious conditions. “I have this platform, and I almost feel like I’ve got a duty of care to raise awareness about it,” she said. Nelson also admitted feeling selfish for not sharing her family’s experience sooner, adding, “a little part of me feels… I feel selfish to keep this to myself and not potentially save a child’s life.”
Nelson spoke candidly about the challenges of balancing her role as a mother with the intense care her daughters now require. Tearfully, she confided, “I won’t lie. The part that really gets me, is I just want to be their mum, I don’t want to be a nurse.” She highlighted the urgency of early diagnosis, noting that their treatment with a one-time gene therapy infusion aims to introduce a functioning gene to counter the effects of SMA. However, she acknowledged, “any that have gone, you can’t regain them,” emphasizing why early detection is critical to stopping muscle deterioration. Despite difficult prognoses that her girls may never walk or regain neck strength and will likely need wheelchairs, Nelson remains hopeful. “They are still smiling. They’re still happy,” she affirmed, appreciating the support they provide each other as twins confronting this challenge together.
Government officials have recognized these concerns. Health Secretary Wes Streeting praised Nelson for highlighting delays in SMA diagnosis and committed to improving the use of genomic medicine in newborn care. Since 2021, the NHS has offered Zolgensma, a life-changing gene therapy for babies with SMA, which delivers a healthy copy of the defective gene. Scotland plans to introduce routine SMA screening for newborns in the spring, and the UK’s National Screening Committee is currently reviewing whether to extend this practice nationwide. An NHS spokesperson confirmed that three new SMA treatments have been rolled out since 2019, and evaluations are underway to decide on adding SMA to the newborn blood spot test or adopting wider genomic sequencing as part of routine checks. Nelson’s advocacy aligns with efforts by SMA UK to ensure that early detection and treatment are available to all affected babies
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