Jesy Nelson brands twins SMA diagnosis a ‘matter of life or death’ as she slams repeated GP failures
FORMER Little Mix star Jesy Nelson has spoken candidly about the ‘heartbreaking’ health challenges her twin daughters have faced.
The singer and campaigner has opened up about how her babies, Ocean Jade and Story Monroe, were failed to be diagnosed with Spinal Muscular Atrophy (SMA Type 1) despite numerous consultations with healthcare professionals.
In an interview on Sky News’ The UK Tonight programme, the former girl band star admitted that the condition was only picked up on when they were six months old – by her mum.
Although health visitors and GPs performed regular checks, the early symptoms of the rare genetic disease – specifically a lack of leg movement – went unnoticed.
The 34-year-old teared up as she explained her campaign for the UK to include SMA screening in the routine newborn heel prick test.
Speaking to host Sarah-Jane Mee, she said: “People are starting to take notice and take it seriously, but it never should have took for me to come along for it to be taken seriously and that’s the part that makes me feel so angry.
“This isn’t just anything. This is a matter of life or death for someone’s child and who gets to decide that?
“Who has the right to decide whether my child is going to be in a wheelchair or not when we’ve literally had three life-changing treatments since 2018?
“The fact that it’s still a thing and we’re still having to scream and shout about it is just mad to me.”
She promised: “I will not stop on my socials talking about it. Trying to do as much TV… yes, it’s big but there’ll still be lots of other people that don’t know about this, so I’ve got to stay noisy.
Following a conversation with UK Health Secretary Wes Streeting, she admitted: “It is so difficult… it’s like, yes, I had that open and honest conversation with you and you said all the right things, but what are you going to do now?
“Now that I’m not in front of you, are you going to continue?”
She reflected on the missed opportunities during early check-ups and urged: “The fact that there were healthcare visitors around my house a lot and we took them to the GP and not one of them saw any of the signs.
“Thank God for my mum, because I dread to think what position I’d be in now if my mum hadn’t have said anything to me.
“It’s one of them things that I constantly go over and I have to sometimes stop myself from doing it because I will drive myself insane.”
Jesy added that the painful diagnosis has changed her outlook for her daughters’ future.
She said: “I don’t want people to think that if you’ve got disability that that defines you because it definitely doesn’t.
“But I’ll openly say if I could have it the other way, I definitely would. Why wouldn’t I want my children to walk and live a fulfilled life?
“I just pray that it does get changed and it does become part of the heel prick test, because the amount of heartbreak and hurt that I’ve had to endure, I’ll never be able to explain it.”
The Boyz hitmaker was previously diagnosed with twin-to-twin transfusion syndrome (TTTS).
The high-risk pregnancy included a 10-week hospital stay and life-saving emergency surgery.
The Brit Award-winner has launched a petition to force the Government to enforce a non- invasive £4 blood test at birth.
Symptoms of SMA depend on which type of condition, but the most common include floppy or weak arms and legs, as well as swallowing and breathing problems.
If untreated, the life expectancy of a baby with SMA Type 1 is two years and intervention is considered critical in limiting long-term impacts.
It could help avoid 33 babies a year left needing a wheelchair for life.
The former Little Mix star has had a tough time after she split from her fiance Zion Foster.
Jesy and Zion first began dating in 2022 after years of friendship.
In January 2025 they announced they were expecting identical twins.
The couple parted ways following the birth of their twin daughters, but remain close as co-parents.
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.