Jesy Nelson

JESY Nelson has broken fans’ hearts as she confessed she’s been “crying all day” with mum guilt.

The mum-of-two has opened up on how her baby girls are struggling amid the high temperatures.

Taking to social media, she told her 10million followers that she is utterly heartbroken over having to put the twins into thick spinal jackets and splints in this heat.

Pop star Jesy shared a glimpse of the girls laying down in their rockers wearing their supports.

She penned over the clip: “I’ve cried all day. Imagine having to wear a spinal jacket and splints in this heat.

“I cannot even begin to tell you how much this breaks my heart into a million pieces. But, if I don’t put them on every day, their spines and feet will only deteriorate and get worse.”

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“These will never correct their spine or feet, it will only prevent it from getting any worse,” continued Jesy.

“Once again no future SMA babies need to suffer like this if they are given the heel prick test and treatment from birth!”

Despite the temperatures soaring above 30 degrees this week, the girls looked content waving their little hands around and taking in their living room.

Dani Dyer wrote in the comments: “Oh Jesy. You are doing amazing,” followed by two red heart emojis.

Billie Shepherd said: “Sending you all so much love. Super mumma, you are amazing.”

“They will still face every obstacle with the biggest smile. They have the best mummy ever and that’s all they need,” one fan penned.

The former Little Mix star’s baby girls – Story Monroe and Ocean Jade – are both battling Spinal Muscular Atrophy (SMA) Type 1 – the most severe form of a rare disease affecting muscle strength and movement.

Both Jesy and her ex-fiancé Zion Foster were told their twins were unlikely to ever walk, and may face serious breathing and swallowing difficulties.

Despite the slim odds, she shared a sweet picture of one of their daughters sitting up in a chair all by herself.

Since Jesy’s babies were diagnosed with SMA she has been tirelessly campaigning to make it mandatory for all newborns to receive a heel-prick to determine whether or not they have the disease.

If SMA is caught early the condition is usually treatable but when left undiagnosed it can be life-threatening and cause death within two years.

A fan told Jesy of her work in her comments: “Want to thank you – just had a baby in Scotland and got the SMA heel prick test as standard. Midwives personally named you and the work you’ve done as to why it’s now offered.”

Former Little Mix star Jesy Nelson was in tears as cameras caught the moment she was given her twin daughters’ devastating SMA diagnosis

Jesy Nelson has candidly shared the devastating moment her twin girls were diagnosed with Spinal Muscular Atrophy (SMA) sobbing: “I don’t know how I’m going to do this.”

The heartbreaking scenes were captured as she filmed for her upcoming documentary, Jesy Nelson: Life Changing. The Amazon Prime Video cameras were on hand to capture the former Little Mix star’s reaction to the awful news as she said she “can’t believe this is happening”.

Doctors revealed the tots’ tests had come back positive. According to the NHS, SMA is “a rare genetic condition that can cause muscle weakness”. The organisation says the condition gets worse over time.

She revealed her whole life has changed, and she was predicted to struggle with the diagnosis. And Jesy is seen with her head in her hands as she says: “I don’t know how I’m going to do this. I feel like I’m going to be heartbroken for the rest of my life.”

But she says she refuses to let anyone else feel her pain and is determined to change laws and regulations surrounding SMA testing. And she has continued to update her followers on her twins’ condition online as the documentary gets ready to air later this month.

In the caption for the trailer, Jesy wrote: “I’m really not sure where to start with this one…All I can say is that I urge everyone to watch this documentary. It’s the most heartbreaking series I’ve ever had to make, but it’s one that needed to be made if we’re ever going to see real change.

“This is only a small glimpse into what my girls have to go through every single day. It’s the reality that so many children born with SMA have to endure and this is only the beginning of their lives.

“I truly hope this helps people understand why the heel prick test and treatment from birth are so incredibly vital. Early diagnosis can change EVERYTHING. I’ll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this.”

She ended with a plea: “Please if you watch one thing, let it be this: “Jesy Nelson: Life Changing” on @primevideouk, streaming from July 17th.”

Last month, Jesy was in Parliament as MPs debated whether to test all newborns for spinal muscular atrophy. She joined forces with the Mirror to highlight her petition which was signed by over 150,000 people demanding all newborns are checked for spinal muscular atrophy.

Scotland introduced screening in March. However, a similar scheme for England will only have a limited roll-out. And Jesy expressed frustration after public health minister Sharon Hodgson defended the staggered launch.

Jesy said: “I cannot believe we are still debating this. You are basically telling me that if you live in a certain postcode, you’re not as important. It’s outrageous.”

The decision, though, was defended by the public health minister, who had said limited testing facilities were preventing a full roll-out of screening for SMA.

The singer highlighted how late diagnosis of her own one-year-old twins meant they began treatment too late after irreversible nerve damage was done. She has since been told they will never walk.

Jesy Nelson: Life Changing will be shown on Prime from July 17

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JESY Nelson has shared her twin daughters’ spinal braces with an emotional message ahead of the upcoming Parliament debate.

The mum-of-two made a candid post explaining her daughters now have to wear them every day.

Jesy shared a snap of her twin daughters Ocean and Story’s spinal braces as she urged fans to attend the Parliament debate on SMA screening.

She captioned the image: “Just a reminder that future SMA babies’ lives don’t need to look like this!

“These are Ocean and Story’s spinal braces that [they] now have to wear every day.”

Jesy also shared a snap of the Parliament debate poster and wrote: “I hope to see as many of you there tomorrow. It’s going to be a big day.”

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It comes after Jesy spoke out about the unjust and “nsane” SMA “postcode lottery” – which “decides if children will be disabled or not.”

The loving mum appeared on social media in a candid video expressing her deep frustrations over ‘unfair’ Spinal Muscular Atrophy (SMA) heel prick testing.

The X Factor star – who has racked up over 150k signatures – is calling for SMA to be tested for at birth regardless of where you live.

The debate is set to take place tomorrow, June 22, and, if granted, SMA screenings will be added for newborns.

The singer’s daughters Ocean Jade and Story Monroe were born prematurely in May last year and were diagnosed with Spinal Muscular Atrophy (SMA) Type 1.

In the emotional video, the singer said: “I just wanted to come on here to basically chat about a few things that are just so incredibly important to me and I know so many other people.

“Some of you may be aware of the fact that I’ve been trying to get SMA as part of the heel prick test here in England, and thank God for you guys, the signatures got over 150,000 and because of that, it is now going to get debated in parliament this Monday coming up, which is just crazy to me to know that we did that and I just need you guys to know that this has never been debated in parliament before.

“There has been a whole community of people that have been screaming and shouting about this for years and years and years, and it’s never been able to get this far, because it’s been ignored every single time.

“But you guys did it, because you made enough noise and you supported this and you got it there and I cannot thank you guys enough…

“So many thoughts have been going through my mind over this week, because every time I think about it, I’m like, how am I going to Parliament on Monday to debate whether children, future children, are going to be disabled or not?

“That’s how deep it is, because if your child gets this treatment from birth with a simple heel prick test and they get this treatment, you would not even know that they have SMA. 

“That’s how deep it is, right? That is how life-changing this treatment is. You would not even know that your child has SMA, but if they don’t get this treatment and they don’t get the heel prick test, they will go on to be disabled…

“And not only be disabled, but they will go on to have breathing machines, coughing machines, constant operations. It never ever ends.

“And I still can’t believe that in this day and age, when we’ve had three life-changing treatments now for nearly six years, it’s still a thing. It’s still not here in England.

“It is being rolled out in October, but only in certain parts of England.

“How does that make sense? How are we playing postcode lottery with children’s lives? How is that okay? I cannot stress you how important this is.

“This is our future, future children we are deciding on. Mums now that are currently pregnant and maybe about to have a baby that could potentially have this disease. We’re basically going to decide whether they’re going to be disabled or not, like it blows my mind.

“And I just seem to stress this so much, because that’s how deep it is. We are playing with children’s lives and it is not okay.

“It’s not okay to be like, if you live in this area, your child won’t be disabled, but if you live in this area, yeah, they’ll be disabled.

“We’re not doing this anymore. We’ve made too much noise now for this to be ignored.

“Anyway, sorry for getting irate about this, but it makes me so sad to think that my children’s lives could look so different and not only my children’s lives, but so many other families and children are dealing with this across the whole of England.”

Alongside the tear-jerking post, she added: “We have had some amazing news that screening is due to start in October this year, which is a huge step forward!

“But there’s still a big problem… it will only cover 72% of England. That means some babies won’t be screened simply because of where they live.

“A postcode lottery like that just isn’t fair. Every baby deserves the same chance, everybaby’ss life matters!

“On Monday 22nd June, the petition will be debated by MPs in Parliament. I’ll be there alongside @gileslomax from SMA UK and we’re hoping this debate will help push for screening to be available for every newborn across England.

“We’ll be arriving at 5pm on Monday, and it would mean so much to see as many of you there as possible. We’d love to get a photo together outside Parliament before we head inside.

“Please if you can, tag your MP in the comments and ask them to attend the debate and support universal newborn screening for SMA.

“The areas currently missing out on screening are: Bristol, Cambridge, Portsmouth, Leeds, Liverpool, Oxford.

“No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity. Thank you for standing with us every step of the way!”