Emotional Jesy Nelson’s fresh heartache as twin daughters suffer health setback after ‘bittersweet’ SMA campaign victory
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?
“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.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a persons 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 fault 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.