Former Little Mix singer Jesy Nelson said none of the healthcare workers who checked her twin babies realised they had a rare genetic condition which means they may never walk – and it was only thanks to her mum that they were diagnosed.
Earlier this month, Nelson, 34, announced in an emotional Instagram video that her baby twins had spinal muscular atrophy type 1 (SMA1).
Speaking to Sky News’ The UK Tonight programme with Sarah-Jane Mee, Nelson described how her girls were diagnosed with the condition only at six months, despite repeated visits to the GP and healthcare visitors checking in on them.
“When I took them home, I was very on edge about everything,” she said.
“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.”
There is treatment for SMA, but an early diagnosis is key to its effectiveness.
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Nelson said she took the twins to the GP three times because they weren’t feeding properly but was told “they are absolutely fine”.
“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.
“That just goes to show how little awareness there is about it.”
Nelson continued: “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…
“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.”
Nelson recently met with Health Secretary Wes Streeting to raise awareness about the condition and continue the conversation on SMA.
She said she won’t stop talking about it on her 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”.
Watch the full interview with Jesy Nelson on Sky News’ The UK Tonight from 8pm on Thursday.
