Former Little Mix singer Jesy Nelson has launched a heartfelt campaign calling for a crucial change to newborn health checks in the UK, following a devastating diagnosis for her twin daughters.
A Heartbreaking Diagnosis for the Twins
Jesy Nelson and her fiancé, Zion Foster, welcomed their premature twin girls, Ocean Jade and Story Monroe, in May 2025. Initially thought to be healthy, the infants later received a life-altering diagnosis: Spinal Muscular Atrophy (SMA) Type 1. This rare genetic condition causes progressive muscle weakness and is currently incurable.
In an emotional update from hospital, Nelson revealed that doctors have indicated her daughters will likely never walk. She explained that an earlier diagnosis via the routine heel prick test given to newborns could have allowed for immediate treatment, potentially altering their prognosis dramatically.
The Fight for Mandatory Screening
Driven by her family's experience, Jesy Nelson is now petitioning the UK government and the NHS to include SMA Type 1 in the standard newborn screening programme. The simple heel prick test, which currently checks for several other conditions, is not used for SMA in the UK, despite being routine in many other countries.
"The main thing I want to get across here is that, the majority of this can be prevented if it's detected from birth and all it takes is a heel prick," Nelson stated. She emphasised that early detection allows for treatments that can enable children to live healthier, more active lives, contrasting with the future her own twins now face.
An Outpouring of Support and a Determined Campaign
Nelson shared her gratitude for the wave of support from fans and celebrities, including her ex-boyfriend Chris Hughes. In a recent Instagram story, she said, "I’m genuinely actually really overwhelmed by the amount of support... Thank you from me and the SMA community."
She confirmed the petition is now active, declaring her determination to see the change through. "I am starting a petition to try and get the SMA on the newborn screening heel prick testing from birth... I am going to fight as much as I can to make this part of the newborn screening. It’s currently under review," she told her followers.
According to the NHS, Spinal Muscular Atrophy worsens over time, though treatments exist to manage symptoms. Jesy Nelson's campaign highlights a critical gap in the UK's preventative healthcare for infants and has ignited a conversation about the importance of early genetic screening.
