Former Little Mix singer Jesy Nelson and her fiancé, rapper Zion Foster, have launched a heartfelt campaign for change after their twin daughters were diagnosed with a severe genetic condition.
A Devastating Diagnosis for the Young Family
Jesy Nelson, 34, welcomed twin girls Ocean and Story with Foster in May 2024. The couple's joy turned to devastation when doctors later diagnosed both infants with Type 1 Spinal Muscular Atrophy (SMA). This is the most severe form of the neuromuscular disorder, with symptoms appearing in infancy and including profound muscle weakness, swallowing difficulties, and respiratory problems.
The couple were reportedly blindsided by the diagnosis. Nelson is now spearheading a campaign to have SMA added to the UK's newborn blood spot screening, commonly known as the heel prick test. She has started a petition demanding the change, arguing that early detection is crucial now that revolutionary treatments exist.
A Father's Poignant Tribute to His 'Warrior Girls'
On Thursday, Zion Foster took to Instagram to share an emotional, self-penned poem addressed to his daughters as he grapples with their daily reality. The moving verse centred on themes of acceptance and unconditional love.
"They said it's unlikely you'll walk, you may not be able to talk, probably won't be able to hold your head up, that's what me and Jesy heard - SMA Type 1," he read. The poem questioned medical prognoses, focusing instead on the present moment: "I watch your smiles like sunsets, not promised, but real."
Foster directly addressed his daughters, writing: "Story, is your heart okay? Ocean, how's your mind? I hear strength in your lungs every time you cry, two little warrior girls who already know how to fight." He concluded that his deepest worry was not about developmental milestones, but about "accepting you, loving you for who you are right now, without conditions."
Campaigning for Change in UK Healthcare
Captioning the post, Foster praised Nelson for highlighting a "huge flaw" in England's healthcare system. "Reality is, it’s indefensible and needs to be changed, simple. Test kids at birth for SMA in the UK now that there are revolutionary treatments available," he wrote.
Nelson, who has 9.7 million Instagram followers, discussed the campaign on This Morning. "I have this platform, and I almost feel like I’ve got a duty of care to raise awareness about it," she said. "A little part of me feels... it feels selfish to keep this to myself and not potentially save a child’s life."
She revealed her life has "completely changed," with her home resembling a hospital. "I just want to be their mum, I don’t want to be a nurse," Nelson admitted. The twins have now received a one-off gene therapy infusion, which stops further muscle deterioration but cannot restore lost function.
The UK National Screening Committee does not currently recommend newborn screening for SMA, though it has commissioned a review due to new treatments. Notably, Scotland has announced it will begin screening babies from spring 2025.
The NHS heel prick test, offered at five days old, currently screens for nine rare but serious health conditions. Nelson's campaign aims to make SMA the tenth.
