Little Mix star Jesy Nelson couldn’t hold back the tears on This Mornng as she discussed her twin babies’ diagnosis that could leave them without the ability to walk
Jesy Nelson broke down in tears on This Morning as she opened up about the missed changes to recognise her twin girls’ diagnosis. The Little Mix star recently shared that her eight month old twins have been diagnosed spinal muscular atrophy and may never walk.
The mum became emotional as she said: “I could have prevented this from happening if I’d have seen a video and caught it early enough.”
Jesy 34, welcomed daughters Ocean Jade and Story Monroe in May last year after they were born 31 weeks premature.
In her first interview since sharing the heartbreaking news, Jesy said: “My whole life has changed. My house looks like a hospital. My whole hallway is filled up with medical stuff and it’s just crazy how you can go from one extreme to the next.
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“Bless Little Story, she has to be on a breathing machine at night because she isn’t strong enough to breathe by herself at night. I have to put feeding tubes down their nose and I’ve had to learn this within a few days of getting their diagnosis and it’s so much while you’re trying to deal with this horrendous thing that’s just happened.”
Jesy couldn’t hold it together, as she admitted: “That’s the part that really gets to me – I just want to be their mum, I don’t want to be a nurse. It’s hard, but yeah, it’s just I just want to reiterate that if it’s caught from birth, it’s life-changing.”.
The former X Factor star is now campaigning for SMA1 screening at birth and has started a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test.
Jesy , who has 9.7 million followers, said: “I have this platform, and I almost feel like I’ve got a duty of care to raise awareness about it.
“A little part of me feels – I don’t know if this is even crazy to say this – it feels selfish to keep this to myself and not potentially save a child’s life.”
Jesy said she had raised concerns about her daughters’ breathing, which she says looked to be a struggle from their belly, and that they were moving their legs less each week.
The star said she was told that her girls were premature and were developing slower than babies of their age.
“I will never accept this diagnosis,” said Jesy. “We could have saved their legs.” The condition becomes more treatable the sooner it is caught after birth.
Jesy said: “When you know that there is something that can be done about it and it is life-changing to your child, that’s the part that I cannot accept and that is why I’m going to shout to the rooftops about this.”
The former girlband star is now campaigning for SMA1 screening at birth and has started a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test. Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
On Tuesday, Health Secretary Wes Streeting told ITV news he backed the singer’s move to challenge the screening process for the rare genetic condition, and said she was “right to challenge and criticise how long it takes to get a diagnosis”.
Nelson rose to fame after winning The X Factor in 2011 with Little Mix alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall.
She left the band in December 2020 after nearly a decade together, and has since released two songs as a solo artist: Boyz, which featured US rapper Nicki Minaj, in 2021 and Bad Thing in 2023.
It comes just days after the Boyz hitmaker took to Instagram to thank fans for their support. Speaking to the camera, she said: “Hey guys, I just wanted to come on here to do another video to basically just say thank you genuinely so so much from the bottom of my heart for just the outpour of support, and beautiful messages for me and for so many other families who are dealing with this horrible diagnosis.
“Genuinely, I’m overwhelmed with the amount of support. I want to thank anyone who has shared it, to everyone who wanted to learn about it, who watched it and sent me messages. Thank you from me and the SMA community.”
Jesy added that she was already taking steps to bring attention to conditions like SMA. “I also wanted to say that I am starting a petition online to get SMA on the newborn screening and testing. I just need you to know that I am so determined to make this happen. So I’m going to fight as much as I can. It’s currently under review so I will keep you updated.”
Jesy and her musician fiance Zion Foster welcomed their daughters in May. Over the ensuing months, Jesy noticed that her daughters were not moving as much as they should have been for their age and struggled to feed. She took them to the GP and they were eventually diagnosed with SMA Type 1.
If you have been affected by this story, advice and support can be found at SMA UK. You can get in touch by phoning 01789 267520 or by emailing office@smauk.org.uk.
Source: Mirror
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