Jesy Nelson has revealed she is “deeply touched” as she officially becomes a patron of SMA UK, following the devastating diagnosis of her twin daughters — a moment that has reshaped her life, her priorities, and her future.
The former Little Mix star has stepped into the role as part of her growing campaign to see the newborn heel-prick test expanded to detect Spinal Muscular Atrophy Type 1 (SMA1) earlier — a change she believes could spare families unimaginable heartbreak.
Jesy first shared news of her daughters’ diagnosis last month, after welcoming twins Ocean Jade and Story Monroe, whom she shares with ex-partner Zion Foster, prematurely in May 2025.
Now, determined to turn pain into purpose, Jesy has confirmed she is officially joining SMA UK as a patron — using her platform to amplify the voices of families living with the condition.
Taking to Instagram to share her certificate of patronage, Jesy wrote:
“Today I’m incredibly proud to share that I’ve officially become a patron of SMA UK.”
She continued:
“This truly means so much to me. I’ve been deeply touched by the SMA community — by the strength of the children, the resilience of the families, and the love that surrounds them every single day.”
Jesy made clear that her mission extends far beyond her own family.
“I’ll be using my voice to keep raising awareness not only for my girls, but to support families going through the same experiences, and campaigning for the SMA test to be added to the newborn screening heel-prick test so more babies can get the help they need as early as possible.”
Encouraging supporters to get involved, she added:
“Absolutely anything makes a difference. Any support, donations, sharing, conversations — every action helps bring awareness and hope.”
Jesy also shared details of how fans can support the cause, including a £5 text donation option.
Her announcement comes as she continues to speak openly about the emotional reality of caring for two babies with complex needs — a journey she has described as both overwhelming and relentless.
On Friday, Jesy released her deeply personal documentary Life After Little Mix, where she spoke candidly about her daughters’ diagnosis, as well as the events leading up to her decision to leave the chart-topping band in 2020.
Shortly after its release, Jesy celebrated the news that the documentary had reached number one on Amazon’s viewing charts. Sharing footage of her twins alongside the television screen displaying the achievement, she wrote:
“Still can’t believe it — thank you everyone.”
Since going public with her daughters’ condition, Jesy has repeatedly called on the NHS to expand the standard newborn blood spot test to include SMA1, explaining that the additional screening costs around £1 per baby.
She has said earlier detection could have significantly altered her daughters’ outcomes by allowing access to treatment sooner — a point she has returned to time and again in interviews and public statements.
As her campaign gained momentum, Jesy shared an emotional moment with fans when a petition calling for change surpassed 100,000 signatures — a milestone that saw her and friends collapse into tears and cheers as the number climbed. The total has since risen well beyond 120,000.
Captioning the moment, 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.”
She added:
“This is the first hurdle — but we bloody did it. And I truly believe that together we are going to make change.”
As her advocacy intensifies, Jesy has revealed she has placed her music career on hold.
Appearing on Heart FM’s Breakfast show, she told Amanda Holden and Jamie Theakston that her focus is now entirely on her daughters.
“My girls are my main focus,” she said. “They are my whole heart and soul.”
Jesy explained that her priority is continuing to campaign for improved screening and doing everything possible to strengthen her daughters’ future.
She has previously spoken to the Daily Mail about the emotional toll of daily care, revealing that the procedures her babies must undergo often leave her feeling heartbroken as she hears them cry.
Describing life as an emotional rollercoaster, Jesy admitted some days feel unbearably heavy, while others offer brief moments of relief.
“Every day is so full-on,” she said. “I can speak about it, but I’ll never be able to explain how intense it is until you see it.”
For Jesy, becoming a patron of SMA UK marks more than a title — it is a declaration of intent.
What began as a personal tragedy has evolved into a national campaign, one driven by a mother determined to ensure no family is left unaware, unprepared, or unheard.
