Former Little Mix singer Jesy Nelson has announced she is launching a public petition to change UK health policy, following the devastating diagnosis of her twin baby girls with a severe genetic disease.
A Mother's Determination to Fight
The 34-year-old star revealed that her twins, Ocean and Story, born in May, have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA Type 1). This rare condition causes progressive muscle weakness and is the most severe form of the disease infants can face. Doctors have told Nelson that her daughters may never walk.
In an emotional video shared on her Instagram story on Tuesday, 7th January 2026, Jesy expressed her gratitude for the public support before outlining her next crucial step. "I am starting a petition to try and get the SMA on the newborn screening heel prick testing from birth," she stated. "I just need you to know that I am so determined to make this happen. So I'm gonna fight as much as I can."
The Critical Gap in Current NHS Screening
Nelson's campaign highlights a significant gap in the UK's national screening programme. Currently, the NHS offers a heel prick test for newborns at five days old, which checks for nine serious conditions. However, this test does not include screening for Spinal Muscular Atrophy.
This is despite the fact that early diagnosis is vital for effective treatment. The earlier SMA is identified, the better the long-term outcome, as interventions can be started before significant and irreversible muscle damage occurs. NHS Scotland has announced plans to add SMA to its newborn screening programme in 2026, but NHS England has not yet followed suit.
Jesy explained that a simple test at birth could have made a profound difference for her children. She shared that early concerns about the twins' lack of leg movement were initially dismissed, with doctors advising her not to compare her premature babies to others. It was only when they began struggling to feed that she persistently sought answers, leading to months of hospital visits before the eventual diagnosis.
Raising Awareness and Seeking Change
Using her platform, the singer now aims to raise awareness of SMA's early signs and advocate for systemic change. She confirmed she would be appearing on ITV's This Morning to discuss her family's experience in more detail.
In her initial announcement on Sunday, Jesy was candid about the prognosis, stating: "They will be disabled. The best thing we can do right now is get them treatment and just hope for the best." Her new mission is to ensure other families have a better chance through earlier detection.
The petition, once launched, will call on the UK government and the NHS to add SMA to the standard newborn blood spot screening for all babies born in England, bringing it in line with the upcoming Scottish policy and practices in several other countries.
