Imagine being told your nine-month-old twins might not live beyond the age of two. This is the devastating reality Jesy Nelson is facing after her daughters, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy (SMA) type one. But here’s where it gets even more heart-wrenching: despite the grim prognosis, Jesy is sharing her story with remarkable courage, not just to cope with her own pain, but to raise awareness about a condition that could be largely preventable with early detection. And this is the part most people miss—the NHS could screen newborns for SMA with a simple, cost-effective test that could save lives. But why isn’t this already happening? Let’s dive into Jesy’s journey, her unwavering hope, and the controversial questions she’s raising about healthcare priorities.
Jesy Nelson, the 34-year-old former Little Mix singer, has been unapologetically open about her twins’ diagnosis, using her platform to shed light on SMA—a genetic neuromuscular disease that causes progressive muscle weakness and wasting due to motor neuron loss. In a candid conversation with Jamie Laing on his Great Company podcast, Jesy explained the condition in terms anyone can understand: ‘Spinal Muscular Atrophy is a disease where their muscles are deteriorating and wasting away because they’re missing a crucial gene. Without timely treatment, their muscles will eventually die, affecting breathing, swallowing, and everything else. And that’s when they’ll… you know, not make it past two.’ Her voice trembles, but her resolve doesn’t. ‘It’s not okay, but it is what it is. I have to accept it and make the best of this situation. My girls are the strongest, most resilient babies, and I truly believe they’ll defy all the odds.’
But here’s the controversial part: Jesy is demanding the NHS expand the standard heel prick test to include SMA screening. The test costs just £1, and early treatment could have ‘saved their legs,’ she says. So why isn’t this a priority? Is it a matter of awareness, funding, or something else entirely? Jesy’s not afraid to ask these tough questions, and neither should we.
Adding another layer to this already complex story, Jesy’s twins were born prematurely at 31 weeks after battling Twin-to-Twin Transfusion Syndrome (TTTS) in the womb. ‘It’s a condition where identical twins share one placenta, and one baby gets more nutrients than the other,’ she explained. ‘But even the baby getting too many nutrients is affected. Without treatment, they have a 95% chance of not surviving.’ Jesy spent three months in the hospital before their birth, feeling robbed of the typical pregnancy joys. ‘I was so excited to see the birth of my children, and I didn’t even get that,’ she shared.
Since becoming a mother, Jesy has discovered a strength she never knew she had. ‘I don’t really matter anymore—they’re my whole heart and soul,’ she said. ‘Before, I’d worry about things that now seem ridiculous. I’d cry, feel sorry for myself, even stay in bed all day. Now, I don’t have that luxury. It’s hard. It’s really, really hard. But at the same time, I’m so blessed. My girls are superhuman. They’ve been through so much, yet they’re still happy and smiling. How can I be sad when they’re not?’
Jesy’s journey hasn’t been without its challenges. After the twins were born via C-section, they spent a month in the hospital, while Jesy was sent to a local facility, separating her from her babies for the first week. ‘It was heartbreaking,’ she recalled. ‘Every time I’d come in, another woman would be holding my baby. I felt like they didn’t even know I was their mum. It was painful—watching someone else feed them for the first time, knowing that should be my job.’
Even after bringing them home, Jesy noticed signs of SMA but was repeatedly told not to compare her babies to others. ‘Their legs were in this frog-like position, and their bellies were shaped like a bell,’ she said. ‘I later learned that’s typical for SMA babies—their ribs cave in, and they breathe from their belly, not their chest. But I had no idea. I thought it was normal.’
When Jesy’s mother pointed out that the twins weren’t moving their legs much, Jesy initially brushed it off, thinking it was due to their prematurity. But a week later, while changing their nappies, she noticed their legs were completely still. Tests revealed hypertonia and an enlarged head in one baby, prompting brain scans. Jesy’s heart sank as she Googled the symptoms and SMA kept appearing. ‘I just knew,’ she said. ‘I could see them deteriorating right in front of my eyes.’
After a private consultation in London, the diagnosis was confirmed: SMA type one. ‘Your children are practically paralysed from the waist down,’ the doctor said. Jesy’s focus shifted to getting them treatment, but delays in testing added to her anguish. ‘Time was of the essence,’ she said. ‘Every day felt like a wasted opportunity.’
Now, Jesy is fighting to make SMA screening a standard part of newborn testing. ‘If SMA1 is treated pre-symptomatically, the disease can be largely prevented,’ she emphasized. ‘Why aren’t we doing this already?’ It’s a question that deserves an answer—and action.
And this is where you come in: Do you think the NHS should prioritize SMA screening for newborns? Is it a matter of awareness, funding, or something else? Share your thoughts in the comments—let’s keep this conversation going. Jesy’s story isn’t just about her twins; it’s about every child who could be saved with a simple test. What’s stopping us?
