Nelsons

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.

Jesy Nelson has celebrated her twins turning one with a lavish double birthday bash.

The singer posed with daughters Ocean Jade and Story Monroe surrounded by balloons and pastel party decorations at the sweet celebration.

But the former Little Mix star has also been reflecting on her emotional first year as a mum, sharing a touching video montage of her journey with daughters Ocean Jade and Story Monroe.

Ocean Jade and Story Monroe Nelson were diagnosed with SMA1, a rare genetic condition that causes progressive muscle weakness and movement difficulties.

Narrated by Jesy herself and set to soft piano music, the clip featured a poem about parenting children with disabilities and the difference between the motherhood she expected and the reality she has experienced.

The poem compares raising a child with additional needs to planning a dream trip to Italy, only to unexpectedly land in Holland instead.

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Widely shared by parents of disabled children, the emotional piece explains that while life may not turn out how you first imagined, it can still be filled with beauty, love and joy.

It has become a well-known piece of writing within disability and parenting communities for its message about embracing a different path.

Jesy accompanied the video with a heartfelt caption which ended: “Happy Birthday my Ocean and Story you are my whole heart and soul I love you more than you will ever know.”

The 34-year-old described her girls as “tiny little super humans” and “he strongest, most resilient little fighters I’ve ever known” in a heartfelt caption.

The twins’ dad is rapper and singer Zion Foster, who began dating Jesy in 2022 and got engaged to the former Little Mix star last year.

However, the couple later split following the devastating diagnosis of their daughters’ SMA1 condition, though they have remained close and are continuing to co-parent together