Former Little Mix singer Jesy Nelson was overcome with emotion on Friday as her official petition calling for routine newborn screening for Spinal Muscular Atrophy Type 1 (SMA1) surpassed the critical 100,000 signature threshold. This landmark achievement guarantees that the matter must now be debated by Members of Parliament in the House of Commons, bringing national attention to the devastating genetic condition.
A Mother's Campaign for Her Daughters
The 34-year-old pop star, who welcomed twin daughters Ocean Jade and Story Monroe prematurely in May 2025 with her former partner Zion Foster, has been a vocal advocate since her babies were diagnosed with SMA1. This severe neuromuscular disease causes progressive muscle weakness and wasting, often requiring feeding tubes due to severe difficulties with swallowing, sucking, and breathing.
Jesy has passionately demanded that the NHS expand the standard heel prick test, administered to newborns, to include screening for SMA1. She argues that the test, which costs approximately £1 per child, could have dramatically altered her twins' prognosis by enabling earlier intervention. "It could have saved [my twins'] legs," she has stated, emphasising the critical window for treatment.
An Emotional Milestone Captured on Social Media
Taking to Instagram, Jesy shared a heartfelt video clip of herself and a group of friends watching the petition's signature count climb in real-time. The moment it hit 100,000 was met with a wave of cheers and tears from everyone in the room. The petition has since surged to over 120,000 signatures.
In an emotional caption accompanying the post, Jesy wrote: "I cannot actually put into words how grateful I am that this moment has just happened right here! And it is all thanks to you guys. Thank you to every single person that took time out of their day to sign this petition. You have no idea how much this means to me and the SMA community. This is the first hurdle but we bloody did it and I truly believe that together we are going to make change!"
Putting Music on Hold for Advocacy
As her campaign intensifies, Jesy has revealed that she has temporarily parked her music career to focus entirely on her daughters and the fight for universal SMA screening. Appearing on Heart FM's Breakfast show with Amanda Holden and Jamie Theakston, she explained her current priorities.
"Look, listen, I’d never say never to music, but for me, my girls are my main focus," she said. "I’ll be honest with you, I’ve not got time, I really don't. They are my whole heart and soul and my main focus, and I want to continue advocating for them and getting this heel prick test changed and getting them strong, that’s my main focus. Because that’s going to determine their future."
The Daily Reality of Caring for SMA Twins
Jesy has spoken candidly about the immense challenges of daily care, describing the medical procedures her twins must endure as heartbreaking. She told the Daily Mail that some days feel "really f***ing s***" on what she calls an emotional rollercoaster, while others are slightly lighter. Neither she nor Zion expected to be providing such intensive medical care, and she admits it is a daily struggle.
"Every day is so full-on - I can speak about it, but I'll never be able to explain how intense it is until you see it," she revealed.
Reflecting on Little Mix Departure in New Documentary
Meanwhile, in her new Prime Video documentary, Jesy Nelson: Life After Little Mix, the singer addresses the circumstances surrounding her abrupt departure from the globally successful girl group in 2020, following a secret suicide attempt.
She expressed regret that her lawyer informed her bandmates—Perrie Edwards, Leigh-Anne Pinnock, and Jade Thirlwall—of her decision to leave before she could explain her mental health struggles personally. "Unfortunately, the lawyer ended up letting them know that I wanted to leave, before I could let them know, so I think they felt really hurt by that," Jesy recalled.
This created a significant rift. When she attempted to reconcile, the group requested a therapist be present for the conversation. "I didn't feel like they were my sisters," she said, noting that their final group phone call felt awkward and distant, like talking to strangers. "It was the most uncomfortable phone call I've ever had... and that was the last time I ever spoke to them as a group."
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy (SMA) is a genetic disease that weakens strength by affecting motor nerve cells in the spinal cord, leading to gradual muscle wasting. Severity varies by type:
- Type 1 SMA: The most severe form, evident at birth. Sufferers cannot sit and it often leads to death by age five.
- Type 2 SMA: An intermediate form where the sufferer is unable to stand.
- Type 3 SMA: A mild form that makes rising from a sitting position difficult.
- Type 4 SMA: Symptoms typically do not appear until adulthood, in the 20s or 30s.
Jesy Nelson's campaign focuses specifically on screening for Type 1 at birth, hoping to change outcomes for future families across the UK.
