Jesy Nelson Confronts Government Over Lack of Newborn SMA Screening
Former Little Mix singer Jesy Nelson is today launching a formal petition with Parliament, demanding that all babies in the UK be checked for spinal muscular atrophy at birth. The 34-year-old is joining forces with the Mirror newspaper and charity SMA UK to campaign for a simple £5 blood test to be added to the NHS heel prick test given to newborns.
Personal Campaign Driven by Family Experience
Nelson's twin daughters, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with the devastating muscle-wasting disease at six months old, despite repeated visits to healthcare professionals. The twins have been told they will never walk, a fate that could have been prevented with early screening.
"I'm really proud to be working alongside the Mirror and SMA UK on this campaign and launching this petition," Nelson said. "This is something that means a lot to me personally, and I'm passionate about using my platform to raise awareness, support families affected, and help drive real change."
Treatments Available But Timing is Critical
Three treatments are currently available on the NHS that can either correct the faulty gene or provide a replacement for the key protein, preventing muscles from dying off. These treatments are effectively a cure, but only if administered at birth before irreversible muscle damage occurs.
Without early diagnosis and treatment, babies with SMA often require wheelchairs, breathing machines, and feeding tubes directly into their stomachs. Nelson has been documenting her family's journey on Instagram to raise awareness of the rare genetic condition since giving birth prematurely in May with fiancé Zion Foster.
Controversial NHS Pilot Plans
Current NHS plans for a pilot programme would see approximately 163,000 newborns in England—about one third of all births—not tested for SMA. These babies would act as a "control group" to compare outcomes and assess the effectiveness of newborn screening. Medical experts have branded this decision "unethical" given the availability of effective treatments.
Petition Gains Momentum
The parliamentary petition has already garnered more than 6,000 signatures. If it reaches 10,000 signatures, the Government is required to respond. Should it amass 100,000 signatures, Parliament must debate the issue. Nelson expressed her gratitude for the support in a social media post: "Any support, shares or signatures would mean the world to me and to so many other families."
This campaign highlights a critical gap in newborn healthcare and underscores the importance of early intervention for genetic conditions like spinal muscular atrophy.
