As Jesy Nelson opens up about her twins’ spinal muscular atrophy (SMA) diagnosis, two parents who know the importance of early screening all too well are pushing for change within the NHS
16:07, 04 Jan 2026Updated 16:08, 04 Jan 2026
Today, Jesy Nelson has opened up about her twins’ heartbreaking spinal muscular atrophy (SMA) diagnosis, which could mean they’ll never walk. Sadly, she’s far from the only mother facing the realities of SMA, which can be fatal within just two years if left untreated.
On May 15, Jesy, 34, and fiancé Zion Foster, 27, welcomed their daughters Ocean Jade and Story Monroe Nelson-Foster to the world, following a difficult pregnancy and an emergency procedure. Unfortunately, there were more challenges to come for the baby girls, after it emerged they were suffering from SMA Type 1, a severe form of the disease which kills muscles in a person’s body over time.
Opening up to followers on Instagram, Jesy shared: “When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best. Thankfully, the girls have had their treatment, which I’m so grateful for. If they didn’t have it, they would die.”
READ MORE: Jesy Nelson’s boyfriend Zion breaks silence with hopeful message and new photo of twinsRosie and Wes’s two children both have SMA, but their lives will look very different(Image: Facebook/Marley’s Journey)
Messages of support have flooded in for Jesy, including Rosie and Wes, who have shared their own personal experience of raising two children with SMA, with very different outcomes. Taking to their Marley’s Journey, Facebook page, the parents, from Driffield, East Yorkshire, wrote: “Sending so much love and strength to Jesy & her beautiful family with their twin girls’ diagnosis of SMA type 1.”
Rosie and Wes, who are parents to five-year-old Marley and six-month-old Meadow, opened up about their children’s diagnoses in an interview with BBC News back in November, emphasising the importance of early screening. While young Marley, who was diagnosed at five months, is unable to walk or talk and requires help with breathing, little sister Meadow, who was tested at birth, is meeting all her developmental milestones and was able to have gene therapy without delay.
Rosie explained: “The earlier you find out about newborn SMA, the earlier your life turns around. Marley has complex needs and needs full daily life attention. Meadow is going to live a completely normal life and will barely need any breathing support.”
While his baby sister is hitting all her milestones, five-year-old Marley is unable to walk or talk(Image: Facebook/Marley’s Journey)
Drawing from their own experiences, Rosie and Wes are now backing a campaign by the charity SMA UK, which is pushing for this disease to be added to a blood spot test that already checks newborns for 10 rare but severe conditions. At the time of writing, SMA screening is only carried out on babies who already have a brother or sister with the condition.
According to SMA UK, in 2024, an estimated 47 babies were born with SMA in the UK, although an estimated one in 40 people carries the altered gene that can cause it. For Rosie and Wes, their world came “crashing down” when Marley was diagnosed with SMA at five months old. At 16 months old, he was given Zolgensma, a life-enhancing gene therapy drug which delivers a healthy copy of the affected gene.
However, timing is everything when it comes to this treatment, as the nervous system may already be irreversibly damaged. Shedding light on the challenges Marley faces on a daily basis, Rosie said, “Marley has to have respiratory support every single day. He cannot eat orally, so he’s fed via a tube. He has a ventilator at night-time. He can’t walk or talk.”
Marley’s parents are now calling for early screening(Image: Facebook/Marley’s Journey)
For little Meadow, who received the drug at just a few weeks old, it’s a different story entirely, with the baby girl able to roll over just like others her age. Although Marley has made huge leaps with his progress, thanks to medication and physiotherapy, Rosie is well aware of just how different the two siblings’ lives will be. Rosie confided: “I think the guilt that eats me and my partner up, as well as other families of SMA, is massive. If you’ve had a child that’s been diagnosed with SMA, it gets better”.
Back in 2018, the UK National Screening Committee (NSC) recommended against SMA screening for SMA, due to limited evidence of long-term treatment outcomes, as well as cost-effectiveness for the NHS. Over the past few years, however, the NSC has conducted an external review of the decision, on account of “significant developments”, such as new drugs. Going forward, additional evaluation work is scheduled to be carried out within the NHS.
Do you have a story to share? Email me at julia.banim@reachplc.com. Follow Mirror Celebs on Snapchat , Instagram , Twitter , Facebook , YouTube and Threads
READ MORE: Jesy Nelson inundated with support from pals including ex Chris Hughes after diagnosis