Former Little Mix singer Jesy Nelson's campaign to have spinal muscular atrophy included in post-birth baby checks will receive an official response from the Government, following her petition surpassing the required signature threshold.
Campaign Launched After Twins' Diagnosis
The 34-year-old musician launched the petition after her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with SMA1 shortly after their premature birth in May. Nelson has been using her substantial social media platform to raise awareness about the rare genetic condition, which causes progressive muscle weakness and movement problems.
Social Media Mobilisation
On Thursday morning, Nelson announced to her 9.7 million Instagram followers that her petition had gone live, writing: "As you all know, I've been working hard to campaign for SMA to be added to the newborn screening heel-prick test here in the UK. I'm so happy and proud to finally share that my petition is now live."
She added: "Any support, shares or signatures would mean the world to me and to so many other families." The petition has already garnered more than 35,000 signatures at the time of reporting.
Government Response Triggered
Under parliamentary petition rules, any petition that achieves more than 10,000 signatures requires an official Government response. Should the petition reach 100,000 signatures, Parliament would be obligated to debate the matter. Nelson's petition has comfortably surpassed the initial threshold, ensuring ministerial attention.
Meeting with Health Secretary
Nelson recently met with Health Secretary Wes Streeting to discuss the potentially life-changing impact early detection could have had on her daughters. She revealed that her twins' diagnosis means they are unlikely to ever walk or regain neck strength.
The current heel prick test, offered to all babies at five days old, screens for several rare but serious health conditions, but does not include spinal muscular atrophy. The NHS describes SMA as causing muscle weakness, movement problems, breathing and swallowing difficulties, muscle tremors, and bone and joint issues.
Longstanding Campaign
Speaking to the Press Association earlier this year, Nelson acknowledged that the SMA community has been advocating for this change for years. "It has caused a lot of commotion and it's been amazing because the SMA community have been screaming and shouting about this for years, and it's never been taken seriously," she said.
"I'm just really praying that it does eventually get changed sooner rather than later," Nelson added, highlighting the urgency of her campaign.
Documentary to Detail Journey
Nelson's pregnancy was complicated by twin-to-twin transfusion syndrome, a condition caused by abnormal connecting blood vessels in the placenta leading to imbalanced blood flow between twins. Her entire journey, including the pregnancy complications and her advocacy work, will be documented in "Jesy Nelson: Life After Little Mix," a six-part Prime Video documentary series launching on Friday.
The former Little Mix star's campaign represents a significant moment for rare disease awareness in the UK, leveraging celebrity influence to push for tangible policy changes in newborn healthcare screening protocols.
