Jesy Nelson has shared a bittersweet update regarding her ongoing campaign to expand screening for Spinal Muscular Atrophy (SMA) in the UK, revealing that while the news of an upcoming screening rollout is a huge victory, it remains a “postcode lottery” for families across the country. The singer, whose twin daughters Ocean and Story were diagnosed with SMA Type 1, expressed her emotions about the long road ahead despite the triumphs of the past few weeks.
A Major Milestone for the SMA Community
On Friday, Jesy, 34, took to social media to celebrate a significant victory for the SMA community after the NHS confirmed plans to screen over 400,000 newborns for SMA starting in October 2026. The singer, who has been campaigning tirelessly since her daughters’ diagnosis, shared her pride at how far the campaign has come.
“I just wanted to come on here to share some information and news that I have heard over the last couple of days,” Jesy began in her update. “As you know, I’ve been campaigning to try and get SMA as part of the newborn screening here in England. My girls were diagnosed with SMA Type 1 and unfortunately they weren’t tested at birth because it wasn’t here in England.”
Jesy went on to explain that while the new program to screen for SMA at birth is a huge win, there is still work to be done. “They have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible. I know it is a really big moment for the SMA community because this has been going on for years trying to get this passed, so yeah it is a real proud moment,” she said.
The “Bittersweet” Reality of the Rollout
While Jesy was thrilled with the announcement, she also expressed her frustration with the current limitations of the program. Only certain areas in England will be rolling out the SMA tests, meaning that whether a baby gets tested depends on where they live—a situation that Jesy described as a “postcode lottery.”
“It is bittersweet because basically they are only doing it in certain areas of England, so if you do not live in that certain postcode or part of England, then your baby won’t be tested for SMA, which is really sad,” Jesy explained. “It’s essentially a postcode lottery for your baby which shouldn’t be the case. All babies’ lives matter, so as amazing as it is, there is still a long way to go in terms of that.”
Continued Advocacy and Progress
Jesy, whose campaign has received tremendous public support—including over 100,000 signatures on her petition—remains hopeful that the SMA test will eventually be available to all babies across the UK. She also acknowledged the tireless work of her supporters and the role they have played in the campaign’s success.
“I’m going to keep pushing and trying as much as possible to get this so it is in all areas of England,” she said. “And then also the petition you all kindly signed getting 100,000 signatures is now going to be debated in parliament, which is just amazing. That is all down to you guys so thank you so, so much, you’re incredible and I am so appreciative of all the support and love, thank you so much.”
A Mother’s Heartache and Hope for the Future
Jesy has been open about the emotional rollercoaster she has faced as a mother caring for her daughters, who have a prognosis that could see them not survive beyond the age of two. Despite the heartbreaking challenges, Jesy remains determined to stay positive and hopeful for her daughters’ futures, believing that they are strong and resilient enough to defy the odds.
In a previous interview, Jesy described the daily challenges of caring for her twins, sharing how the constant medical procedures leave her feeling like she’s hurting them as they cry and scream. Yet, through it all, she has maintained a fierce hope for their future.
“It’s not okay, but it is what it is, and I just have to accept it,” she said, speaking about her daughters’ condition. “And now just try and make the best out of this situation… And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.”
Gratitude for Support and the Fight Ahead
Jesy’s campaign has already made a significant impact, but she remains dedicated to pushing for nationwide SMA screening and raising awareness of the condition. She is grateful for the support she’s received from her fans, the SMA community, and her colleagues, and is determined to continue her fight until all babies across the UK have access to SMA testing.
As Jesy looks ahead, she knows there is still much work to be done. “I’m going to keep fighting,” she promised. “I’m going to keep pushing for this, and I’m so grateful for the love and support from everyone who’s helped make this possible.”
Jesy’s tireless dedication to her daughters and the SMA cause is a powerful reminder of the importance of advocacy and the impact one voice can have. While the journey is far from over, the progress made so far gives hope to families affected by SMA and brings the promise of a better future for all newborns.
