Jesy Nelson has declared she is ‘so angry’ after healthcare professionals missed symptoms that eventually saw her babies diagnosed with a life-altering disease.
The former Little Mix singer, 34, welcomed twin daughters Ocean Jade and Story Monroe Nelson-Foster with Zion Foster prematurely in May last year after a turbulent pregnancy, having spent most of it hospitalised.
However last month she then shared publicly that they’d ‘never walk’ after being diagnosed with spinal muscular atrophy (SMA), with news of her split from her partner also coming soon after.
In a tearful video posted on social media, Jesy said that she’d been told that without urgent treatment, her daughters would have died.
She went on to say she wanted to share their diagnosis publicly after the past three months had been ‘the most heartbreaking time of my life’.
A few weeks on, Jesy has now given a sit-down interview, in which she detailed how her mother actually noticed something was wrong with the girls, adding they were left facing a ‘life or death’ situation.
In an interview on Sky News’ The UK Tonight programme, the former girl band star explained how the condition was only picked up by her mum rather than healthcare professionals when her daughters were six months old.
Although Jesy said health visitors and GPs performed regular checks, the early symptoms of the rare genetic disease – specifically a lack of leg movement – was not noticed.
‘People are starting to take notice and take it seriously, but it never should have took for me to come along for it to be taken seriously and that’s the part that makes me feel so angry,’ she told host Sarah-Jane Mee.
‘This isn’t just anything. This is a matter of life or death for someone’s child and who gets to decide that?
‘Who has the right to decide whether my child is going to be in a wheelchair or not when we’ve literally had three life-changing treatments since 2018? The fact that it’s still a thing and we’re still having to scream and shout about it is just mad to me.’
Jesy then went on to reveal there were missed chances to pick up on symptoms during early check-ups of her daughters.
‘The fact that there were healthcare visitors around my house a lot and we took them to the GP and not one of them saw any of the signs,’ she shared.
‘Thank God for my mum, because I dread to think what position I’d be in now if my mum hadn’t have said anything to me.
‘It’s one of them things that I constantly go over, and I have to sometimes stop myself from doing it because I will drive myself insane.’
The singer then spoke about her heartbreak over concerns her daughters may not live a ‘fulfilled life’.
‘I don’t want people to think that if you’ve got disability that that defines you because it definitely doesn’t,’ she said.
‘But I’ll openly say if I could have it the other way, I definitely would. Why wouldn’t I want my children to walk and live a fulfilled life?
‘I just pray that it does get changed and it does become part of the heel prick test, because the amount of heartbreak and hurt that I’ve had to endure, I’ll never be able to explain it.’
Jesy is also now campaigning for the UK to include SMA screening in the routine newborn heel prick test.
Symptoms of spinal muscular atrophy (SMA)
The symptoms of spinal muscular atrophy (SMA) affect everyone differently, but can include:
- Problems with breathing or swallowing
- Twitching or shaking muscles (tremors)
- Bone and joint problems – such as an unusually curved spine (scoliosis)
- Muscle weakness – such as floppy or weak arms and legs
- Movement problems – such as difficulty sitting up, crawling or walking
‘I will not stop on my socials talking about it. Trying to do as much TV…yes, it’s big but there’ll still be lots of other people that don’t know about this, so I’ve got to stay noisy,’ she said.
Last month Jesy also broke down in tears during an appearance on This Morning, discussing her daughters’ condition and how she’d ‘never be able to get over it or accept it’.
Asked by hosts Cat Deeley and Ben Shephard about why she went public, she said: ‘I always think if it was on the other shoe and I had seen someone else’s video, maybe I could have prevented this from happening and spotted it sooner.
‘I feel like I have a duty of care… it feels selfish to keep this to myself and not potentially save a child’s life.’
As a result of their SMA diagnosis, Jesy was told by doctors that her twins will ‘probably never walk’ or ‘re-gain their neck strength’ and they will be in wheelchairs.
‘When you know that there is something that could be done about it and it’s life changing, that’s something I cannot accept,’ she continued.
‘I’m still struggling. I just want to be their mum, I don’t want to be a nurse.’
Jesy also went on to thank her fans for the ‘outpouring of support and beautiful messages’. ‘I am genuinely so overwhelmed from the level of support, and I just want to say thank you for sharing, learning about it, took the time to watch it and send their beautiful messages, thank you I appreciate it so much,’ she said.
The singer’s campaigning comes not long after it was revealed she’d split from the father of her daughters – whom she’d first started dating in January 2022.
A source told Metro of the pair’s separation: ‘Jesy is devastated over her split from Zion and is already going through a lot with Ocean and Story’s SMA diagnosis.
‘Who knows what the future holds for them as a couple, but their priority will always be giving their daughters the care they need and deserve.’
Meanwhile a source told The Sun Jesy was no longer wearing her ring after the couple got engaged four months ago.
‘She and Zion remain friends and are fully focused on their daughters. They are fully united in co-parenting. Their priority continues to be the well-being of their daughters,’ they said.
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