Jesy Nelson has shared a heartwarming milestone for one of her twin daughters, who was diagnosed with spinal muscular atrophy (SMA) earlier this year. The former Little Mix star took to Instagram to celebrate the moment her daughter sat upright in her wheelchair, writing: "She looks like such a big girl with no tube on her face and sitting up right in her chair."
Background on the Twins' Diagnosis
In May last year, Jesy welcomed twins Ocean Jade and Story Monroe Nelson-Foster prematurely with then-fiancé Zion Foster. In January, she revealed that both daughters have SMA type 1, a severe genetic neuromuscular disease that causes progressive muscle weakness and, without treatment, leads to a life expectancy of just two years.
Spinal Muscular Atrophy is a rare condition that affects motor neurons, leading to difficulties with breathing, swallowing, and movement. Early diagnosis and treatment are critical for improving outcomes.
New Documentary Raises Awareness
Jesy has been vocal about the need for universal newborn screening for SMA. Her upcoming Amazon Prime documentary, Jesy Nelson: Life Changing, streaming from July 17, offers an intimate look at her family's journey. In a trailer release, she wrote: "It's the most heartbreaking series I've ever had to make, but it's one that needed to be made if we're ever going to see real change."
She emphasised the importance of the heel prick test: "Early diagnosis can change EVERYTHING. I'll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this."
Progress in Scotland
Earlier this year, NHS Scotland announced that SMA will be added to newborn screening, a move Jesy has advocated for. A statement from NHS Scotland read: "This marks a hugely positive step forward for babies and families across Scotland and brings the country in line with many others around the world that already screen for SMA at birth."
With a single national screening laboratory in Glasgow, every baby born in Scotland—around 45,000 per year (45,763 live births in 2024)—will be screened for SMA. Babies identified through screening can receive treatment before symptoms develop, allowing many to follow near-normal developmental pathways.
Emotional Impact on Jesy
In the documentary, Jesy opens up about her grief: "I don't know how I'm going to do this. I feel like I'm going to be heartbroken for the rest of my life." She added: "They could have been able to walk and run and live how a child should live. That’s the part I’ll never be able to accept."
Despite the challenges, Jesy remains determined to fight for her daughters and other children with SMA, using her platform to push for change.
