Former Little Mix Star Reveals Healthcare System Missed Twins' Rare Condition
Former Little Mix singer Jesy Nelson has spoken out about how multiple healthcare professionals failed to recognise the signs of a rare genetic condition in her twin daughters, with diagnosis coming only at six months old thanks to her mother's crucial observation.
Missed Symptoms Despite Repeated Medical Visits
In an emotional interview with Sky News' The UK Tonight programme, the 34-year-old singer described how her girls were eventually diagnosed with spinal muscular atrophy type 1 (SMA1), a condition that affects muscle movement and development. Despite regular check-ups with GPs and healthcare visitors, none of the professionals identified the warning signs that her mother eventually spotted.
"When I took them home, I was very on edge about everything," Nelson explained. "But the one thing I wasn't taking notice of was the movement of the legs... it took for my mum to spot that sign and that's what's really worrying because we had healthcare visitors come a lot and none of them spotted those signs."
Critical Importance of Early Diagnosis
Spinal muscular atrophy is a progressive condition that affects the nerves controlling muscle movement, with type 1 being the most severe form. While treatments exist for SMA, medical experts emphasise that early diagnosis is absolutely crucial for treatment effectiveness and better long-term outcomes.
Nelson revealed she had taken her twins to their GP on three separate occasions because they weren't feeding properly, but was repeatedly told "they are absolutely fine." It was only after the SMA diagnosis that medical professionals recognised the severity of their situation.
"It wasn't until they got their diagnosis that they were then like we've got to keep them in because they're very underweight and they need to go on feeding tubes... and now they are still on feeding tubes," Nelson shared. "That just goes to show how little awareness there is about it."
Mother's Intervention Proved Crucial
The singer expressed profound gratitude for her mother's intervention, stating that the outcome could have been dramatically different without her observation. "Thank God for my mum because I dread to think what position I'd be in now if my mum hadn't had said anything to me..." she said emotionally.
Nelson admitted she frequently revisits the experience in her mind, adding: "It's one of those things that I constantly go over and I have to sometimes stop myself from doing it because I will just like drive myself insane."
Campaigning for Greater Awareness
Determined to prevent similar situations for other families, Nelson has begun campaigning for greater awareness about spinal muscular atrophy. She recently met with Health Secretary Wes Streeting to discuss the condition and push for improved recognition within the healthcare system.
The singer has vowed to continue using her platform to educate others, stating: "I won't stop talking about it on my socials or in the media as there are still a lot of people who don't know about the condition, so I've got to stay noisy."
Her experience highlights significant gaps in medical awareness about rare genetic conditions and underscores the importance of both professional training and parental vigilance in early childhood healthcare.
