Former Little Mix singer Jesy Nelson has shared a deeply personal account of how her mother's vigilance led to the diagnosis of a rare genetic condition in her twin babies, after healthcare workers repeatedly failed to identify the signs.
A Mother's Instinct Proves Crucial
In an emotional interview with Sky News' The UK Tonight programme, Nelson described how her six-month-old daughters were eventually diagnosed with spinal muscular atrophy type 1 (SMA1), a condition that affects muscle movement and can prevent walking. The diagnosis came only after Nelson's mother noticed concerning symptoms that had been overlooked during regular check-ups.
Missed Opportunities in Healthcare Monitoring
"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."
The singer revealed she had taken the twins to their GP three times because they weren't feeding properly, but was repeatedly assured "they are absolutely fine." It was only after the SMA diagnosis that medical professionals recognised the severity of their condition, admitting the babies were "very underweight" and needed feeding tubes.
The Critical Importance of Early Detection
Spinal muscular atrophy has available treatments, but their effectiveness depends heavily on early diagnosis. Nelson's experience highlights what she describes as "how little awareness there is about it" within the healthcare system.
"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," Nelson reflected. "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."
Advocacy and Raising Awareness
Determined to prevent similar oversights for other families, Nelson has taken her campaign to the highest levels of government. She recently met with Health Secretary Wes Streeting to discuss improving awareness and understanding of SMA within the healthcare system.
The singer has vowed to continue using her platform to educate the public, 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."
A Call for Improved Medical Training
Nelson's story underscores several critical issues in paediatric healthcare:
- The importance of thorough developmental assessments during routine check-ups
- The need for greater awareness of rare genetic conditions among healthcare professionals
- The value of listening to parental concerns, even when symptoms seem subtle
- The crucial role that early intervention plays in managing conditions like SMA
Her experience serves as both a cautionary tale about diagnostic gaps in the healthcare system and an inspiring example of how personal advocacy can drive important conversations about medical awareness and early detection protocols.
