Jesy

JESY Nelson has admitted the SMA update is “bittersweet” as she insisted “there’s still so much more to do” as she continues her campaign.

The singer has campaigned for all newborn babies to be screened for SMA after her twins, Ocean Jade and Story Monroe, were diagnosed with the rare condition which causes progressive muscle wastage.

Jesy has previously said it is unlikely they will ever walk and tragically may not live to the age of two.

The 34-year-old launched a petition for more health checks for babies, with it reaching almost 150,000 signatures.

In a letter addressed to Jesy and Giles Lomax, the chief executive of the charity SMA UK, Health Secretary Wes Streeting confirmed that screenings will be rolled out earlier than planned.

Now, they will begin as part of in-screening evaluations (ISE) from October 2026 instead of January 2027.

‘MILESTONE’

Victory for Jesy Nelson as newborns to be screened for life-changing condition

Brave battle

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Jesy took to Instagram with a new clip as she explained that it was a “proud moment” but said there was still a long way to go.

She said: “Hi guys, I just wanted to come on here to share some information I’ve heard over the last couple of days.

“As you know I’ve been campaigning to try and get SMA as part of the newborn screening here in England.

“My girls were diagnosed with SMA type 1 – unfortunately they weren’t tested at birth because it weren’t here in England.

“But they have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible.

“I know it’s a really big moment for the SMA community because this has been going on for years, trying to get this passed.

“It’s a real proud moment but at the same time it’s a bit bittersweet because they are only doing it in certain areas of England.

“So if you do not live in that certain postcode of England then your baby won’t be tested for SMA, which is really sad and it’s essentially postcode lottery for your baby which should not be the case, all babies lives matter.

“As amazing as it is, there is a long way to go in terms of that, so I’m going to keep pushing and trying as much as possible to get this in all areas in England.

“Also, the petition that all of you signed and get the 100,000 signatures, is now going to be debated in parliament is amazing.

“That’s all down to you guys, you are all incredible.

“I just want to say that I am so appreciative of all the support and love and messages.”

She wrote in the caption: “I wanted to update you all on something very close to my heart…

“SMA screening is now set to start earlier, from October 2026 instead of 2027 which is such a huge step forward for early diagnosis and the SMA community.

“It’ll be rolled out in selected areas first, so while this is real progress there’s still so much more to do. We need to keep pushing to make sure every baby has the opportunity to have this heel prick test at birth.

“Also… the petition YOU all supported has reached the stage for a parliamentary debate which means even more awareness where it matters most.

“I truly am grateful for all your support not only for me and my girls, but for everyone in the SMA community… We’re getting closer. Love you all.”

It is believed that more than 400,000 newborns will benefit from the move.

But 163,000 newborns will remain untested so they can act as a control group to compare outcomes.

This has been branded by experts as “unethical” and means that an estimated 11 babies a year will still be diagnosed too late.

ISE is used to test proposed new screening programmes or changes to existing programmes before being adopted nationally.

SMA is a rare but devastating degenerative condition, affecting around one in 14,000 babies, with the majority being type 1 which affects babies less than 6 months old. 

Common symptoms include muscle weakness, such as floppy or weak arms and legs, movement problems, problems with breathing or swallowing, tremors and bone and joint issues that can lead to spine curvature. 

 Most types of SMA are caused by inherited faulty genes and crucially can be picked up through a heel prick blood test.

Tests, including genetic blood tests, are available before, during and after pregnancy but historically have only been offered to at-risk parents and children. 

Jesy’s twins have since had a one-off infusion that puts a missing gene back into their body to stop other muscles from dying.

However, they will not be able to regain any muscles that have already died.

JESY Nelson has revealed her “heart is super heavy” as she shared an SMA screening battle update to social media.

The doting parent, 34, has been relentlessly campaigning for SMA1 screenings in England after her twins were diagnosed with the rare muscle wasting disease.

Jesy took to Instagram and said “Today my heart feels super heavy. It’s a very bitter sweet moment today knowing that Scotland has become the first UK nation to screen babies for SMA.

“We’re so close yet so far.

“I will never be able to understand why we are still not testing for it in England.

“To know that my girls lives and so many other children in England could look so different if this had of been there for them.

STAYING STRONG

Jesy Nelson reveals emotional update on twin daughters’ SMA1 battle

PROUD MUM

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“But never the less I will keep fighting and pushing for change because nobody should ever have to go through this heartache.”

Earlier, Jesy also shared a beautiful video clip of her daughter Ocean sitting up, as she said: “She’s proving everyone else wrong,” and that they are “going to get there.”

Jesy recently became successful in gaining over 100K signatures on her petition to fund SMA1 screenings.

The good news meant it will now be debated by MPs in the House of Commons.

Jesy has been campaigning for change and demanding the heel prick test be included in newborn health plans to help catch the condition early.

The tots have the most severe form of a rare muscle wasting disease and may never be able to walk.

The former X Factor star gave birth to her little girls prematurely at 31 weeks in May last year.

Jesy first revealed her children’s’ devastating diagnosis in an emotional video.

She has emotionally spoken out about how she could have saved her twins’ legs before their diagnosis.

It comes after the second series of her show Jesy Nelson: Life After Little Mix has already been confirmed and will be coming to the small screen later this year.

The popstar confirmed she’ll be fronting the follow-up programme on Amazon Prime Video focussing on her little girls’ health battle.

The singer, 34, rose to fame in the band after they were created on talent show The X Factor, but left the group in 2020 – with the girls continuing on as a three-piece following her departure.

The singer recently opened about a secret suicide attempt days before quitting the group.

Her abrupt exit from the girl band had been shrouded in mystery and she claimed her cry for help was ignored by bandmates Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall.

It was the second time Jesy had tried to take her own life following an overdose in 2013, which she ­previously opened up about in her NTA-winning BBC documentary Jesy Nelson: Odd One Out.

JESY Nelson has shared an adorable video of her daughter’s “ballerina” leg exercises amid her twins’ SMA diagnosis.

The singer gave birth to her little girls prematurely at 31 weeks last year.

And, back in January, Jesy bravely revealed the twins, Ocean Jade and Story Monroe, have since been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1).

It is a genetic condition that weakens the muscles by damaging motor nerve cells in the spinal cord.

It leads to progressive muscle wasting, and if untreated, the life expectancy of a baby with SMA Type 1 is just two years.

Jesy and her ex-fiancee Zion Foster have been told it is unlikely the girls will ever walk, and may face serious breathing and swallowing difficulties.

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The brave mum-of-two has been keeping her fans updated on the twins condition on social media.

Jesy, 34, has now shared a sweet clip of the twins doing their “ballerina” exercises to keep their legs mobile.

Speaking to one of the twins in the video, she said: “Are you gonna show them how you move your legs? Your a little ballerina, come on.

“Good girl. Little ballerina, yes you are.”

Progressive resistance training (PRT) with a little resistance band has the potential to increase strength and increase motor function in children and young adults with SMA, according to the National Institute of Health.

Jesy panned the camera up to her daughter’s face and she seemed super chilled as she bent and unbent her leg.

The tot was spotted with her feeding tube in her nose as it helps to clear their chests.

The former Little Mix singer recently released a fly-on-the-wall Amazon Prime documentary.

The series, which climbed to number one in Amazon’s viewing charts, follows her shock departure from Little Mix in 2020 and her journey to motherhood with her now ex-boyfriend Zion.

Since revealing her twins’ diagnosis, Jesy is now campaigning for the NHS to expand the standard heel prick test to screen for SMA1.

She says the test, which costs around £1, could have “saved their legs” by giving them access to treatment sooner.

If the twins had been tested and treated in time, there was a chance they would have avoided disability.