SMA

JESY Nelson says she “can’t stop crying” over her “bittersweet” victory to test all babies in England with SMA – knowing it came too late for her twin daughters.

The groundbreaking rule change comes as the former Little Mix star faces fresh heartache over her one-year-old kids, Ocean Jade and Story Monroe, whose latest test results sparked concern following treatment for the muscle-wasting disease.

It’s feared the girls will never be able to walk after a late diagnosis of the life-threatening condition Spinal Muscular Atrophy Type 1.

In her new Prime Video show, Jesy Nelson: Life Changing, the singer breaks down in tears over the guilt she carries and worries her children will blame her, when they’re older, for not spotting the signs sooner.

Jesy told The Sun: “I know it’s not my fault, but when I watch back videos of when I brought them home and they were kicking their legs, I realise now that over the course of a month, they just stopped.

“That’s the part where the guilt kicks in because I don’t understand how I didn’t see that. Why didn’t I spot that?

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“But when I left the neonatal ward, I was constantly told to check their temperature, make sure you’re monitoring their breathing and there was so much other stuff that I was looking out for because they were premature babies.

“I just honestly didn’t focus on the movement of their legs.

“Thank God for my mum, because God knows what position I would have been in if she hadn’t spotted it.

“That will probably never leave me. I’ll be honest, I don’t think it ever will. But I really hope as they get older, they understand how flipping amazing they are because they are the most resilient little girls I’ve ever known.

“I’m literally in awe of them. Even with what they have to endure every day, they are the happiest babies.”

At Ocean and Story’s most recent three-month review at St Ormond Street’s Children’s Hospital, doctors warned Jesy the girls were not responding to treatment the way they had hoped.

She said: “Unfortunately, some of the numbers have gone down. We had a long discussion and there’s a possibility they may have to go back on treatment, which is just heartbreaking.

“I constantly battle between manifesting they’re going to defy the odds and trying to come to accept that that may not happen.

“It’s a really weird position to be in because you you think ‘well, if that doesn’t happen, am I just going to feel heartbroken for the rest of my life?’

“Then you worry, if I accept it, am I also manifesting that?”

She added: “I don’t ever want them to feel any less than or feel like it defines them. I really want them to know how special they are.

“I want this to be their little superpower.”

Speaking candidly, Jesy admits the success of her campaign for a breakthrough rule change – adding screening for spinal muscular atrophy to the NHS‘s newborn blood spot test – was a tough pill to swallow.

Every year 50 babies born with the condition will now find out they carry the genetic condition at birth. It means they can be given treatment before nerves and muscles are damaged beyond repair.

Jesy said: “I’ve not stopped crying, I don’t know what’s wrong with me. I just keep going through waves of emotions. I’ve had an outpouring of messages from families within the SMA community.

“It’s just a real weird one because obviously there’s a lot of mixed emotions. I think for people dealing with children that have got SMA, who got diagnosed too late, feel it’s almost a bit bittersweet.

“It’s a tough pill to swallow to know that, yes, this change is amazing and I really don’t want to take anything away from it, but if only this had been here for our children.

“It’s just sad because so many families have campaigned about this for years.

“So yeah I’ve going through a real mix of emotions, but ultimately I am super proud. I’m ridiculously proud and cannot wait until our children are old enough to tell them they’ve played a massive part in change.”

Her new Prime Video doc is released on Friday, July 17.

The 60-minute episode shows the moment Jesy finds out her daughters’ diagnosis and her grit and determination to launch her campaign.

While a phased rollout will begin in October 2026, Jesy’s fight continues to raise awareness of the condition because the screening won’t be available in other parts of the UK.

“I hope as many people as possible see the documentary because I wanted to raise as much awareness as I could about it and the signs to look out for.

“As amazing as the rollout is, Northern Ireland and Wales are still not part of the heel-prick test, meaning many babies will still be undiagnosed and not treated in time.

“I’m just praying that if they watch this documentary, they will spot the signs early enough, take them to the doctor and get them treatment.”

• Jesy Nelson: Life Changing will be available exclusively on Prime Video on July 17.

JESY Nelson has revealed the tragic reason her twin daughters’ treatment for SMA was delayed – despite the increased risk of permanent nerve and muscle damage.

The former Little Mix star details the heartbreaking moment Ocean Jade and Story Monroe, who have have Spinal Muscular Atrophy Type 1, are forced to miss out on the gene-therapy infusion earlier this year.

In her new Prime Video documentary, Jesy Nelson: Life Changing, Jesy says Story was rushed to hospital with pneumonia – just days before Ocean was struck down by another illness.

Speaking in the docu-series, which is released on Friday, July 17, Jesy said: “Not long after we got the diagnosis, they were booked in to have their treatment.

“Then Story got pneumonia and was really struggling to breathe.

“She started choking so we had to rush her into hospital. It breaks my heart because she’s so vulnerable.

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“That’s when we were told that she can’t have the treatment.”

Any delay in treatment increases the chance of permanent nerve and muscle damage

After close monitoring, it was decided that Story and Ocen were not well enough to receive the gene therapy.

Jesy added: “That was when she got given her breathing machine.

“She came home and then Ocean got ill.”

During the episode, which began filming straight after the cameras stopped rolling on her first series, Life After Little Mix.

Her partner Zion Foster – who has since split from Jesy – said: “I’m not equipped to deal with this. I’m out of my depth; emotionally, physically and mentally.”

The documentary covers their split, which was revealed by The Sun earlier this year.

Jesy has since thrown herself into work – tirelessly campaigning to raise awareness of SMA and pressure the government to add the condition onto the NHS newborn heel-prick test, which currently screens for ten other conditions.

On Wednesday, April 1, the Department of Health and Social Care announced that England will bring forward the newborn screening of SMA.

A phased rollout will begin in October 2026. However, screening will not be available in all parts of England.

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 today shared an emotional update about her twins, months after their SMA diagnosis.

The former Little Mix star, 34, has been keeping fans up-to-date with how her daughters, Story and Ocean Jade, are doing as they battle Spinal Muscular Atrophy Type 1.

The tots’ devastating diagnosis is a genetic condition that weakens the muscles by damaging motor nerve cells in the spinal cord.

Today, Jesy shared a new update with fans where she revealed how Ocean and Story had tried eating in their specialised feeding chairs for the first time.

In the heartmelting moment, the singer could be seen feeding her daughters some fruit purée.

Speaking to Ocean as she gently spooned food into her little mouth, Jesy said:: “Excuse me, you’re supposed to eat it, not spit it out.”

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She then turned her attention to Story, who was seen enjoying her dinner,

Jesy previously revealed how she got emotional when the special chairs arrived back in February.

“So the girls need special feeding chairs that came yesterday and I couldn’t help but burst into tears yesterday when I saw them,” she said at the time.

“It just made me feel so sad as it’s just another reminder of another obstacle we have to tackle.”

Meanwhile, Jesy’s latest update comes after she revealed last week how Story, who is just 11-months-old, had said the word “muma” for the first time.

SMA1 patients typically have limited or no spoken speech with communication usually made through eye movement and guttural sounds.

But Jesy’s baby girl is fighting against all odds, and managed to very clearly get out her first word, in a video posted on Instagram.

Story was wrapped up in a blanket, laying down on the sofa when she gave her mum quite the shock.

Jesy could be heard shouting with happiness: “Yeahhhhhh! Yesss clever girl.

“Storyyy good girl, you’re such a clever girl. Wow well done. Yeah do it again.”

The Boyz singer wrote the words, “Story said muma for the first time my life is complete,” over the top of the clip.

Jesy captioned the post: “My heart is so full.”

The star bravely revealed the twins SMA1 diagnosis back in January and has since been keeping fans updated on their battle via social media.

Both the girls have had feeding tubes fitted into their noses to clear their chests.

TV star Jesy has also shared some of the stretches she’s been doing with the girls to help strengthen their legs.

SMA1 leads to progressive muscle wasting, and if untreated, the life expectancy of a baby with the disease is just two years.

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

The 34-year-old has opened up on her hopes to use her platform – of over 10 million followers – to raise awareness of SMA1 and shine a light on the realities families face when caring for children with the condition.

Jesy previously said that if sharing her story helps even one other parent feel less alone, it will be worth it.

Spinal Muscular Atrophy: Signs and symptoms

Spinal muscular atrophy is a disease which takes away a person’s strength and it causes problems by disrupting the motor nerve cells in the spinal cord.

This causes an individual to lose the ability to walk, eat and breathe.

There are four types of SMA – which are based on age.

• Type 1 is diagnosed within the first six months of life and is usually fatal.
• Type 2 is diagnosed after six months of age.
• Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
• Type 4 is the rarest form of SMA and usually only surfaces in adulthood.

What are the symptoms?

The symptoms of SMA will depend on which type of condition you have.

But the following are the most common symptoms:

• Floppy or weak arms and legs

• Movement problems – such as difficulty sitting up, crawling or walking

• Twitching or shaking muscles

• Bone and joint problems – such as an unusually curved spine

• Swallowing problems

• Breathing difficulties

However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.

How common is it?

The majority of the time a child can only be born with the condition if both of their parents have a faulty gene which causes SMA.

Usually, the parent would not have the condition themselves – they would only act as a carrier.

Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.

If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get spinal muscular atrophy.

It affects around 1 in 11,000 babies.