Jesy Nelson fought back tears as she issued an emotional plea for every newborn baby in England to be screened for spinal muscular atrophy, warning that access should never depend on where a family lives.
The former Little Mix singer, 35, spoke candidly in a social-media video ahead of a parliamentary debate prompted by a petition that has attracted more than 150,000 signatures.
Jesy launched the campaign following the diagnosis of her twin daughters, Ocean Jade and Story Monroe, who were born prematurely in May 2025 and later found to have Type 1 spinal muscular atrophy, commonly known as SMA.
The mother-of-two is calling for SMA to be included universally in the heel-prick blood test offered shortly after birth.
Although she welcomed plans for newborn screening to begin in parts of England in October, Jesy said the proposed coverage would reach only 72 per cent of the country.
She described the difference in access as an unacceptable “postcode lottery”, claiming that some babies could receive an earlier diagnosis simply because of where they were born.
Becoming visibly emotional, Jesy told followers that the campaign was deeply personal but also affected families across England.
“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,” she began.
The singer thanked supporters for helping the petition cross the threshold required for consideration in Parliament.
“Thank God for you guys, the signatures got over 150,000,” she said.
“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.”
The debate is scheduled to take place on Monday, June 22, with Jesy expected to attend alongside Giles Lomax from the charity SMA UK.
She said campaigners had spent years attempting to bring the issue to the attention of politicians but had repeatedly felt ignored.
“There has been a whole community of people that have been screaming and shouting about this for years and years and years,” she said.
“It’s never been able to get this far because it’s been ignored every single time.”
Jesy credited her followers and the wider SMA community with creating enough public pressure to secure the debate.
“You guys did it because you made enough noise and you supported this,” she said.
“I cannot thank you guys enough.”
SMA is a genetic condition affecting the nerves responsible for muscle movement.
Type 1 is described as the most severe and commonly diagnosed form in babies, although the condition and response to treatment can vary between individuals.
Jesy argued that identifying the condition shortly after birth could allow affected children to access treatment at a much earlier stage.
Speaking through tears, she described the possibility of Parliament having to debate whether every child should receive the same opportunity as difficult to comprehend.
“So many thoughts have been going through my mind over this week,” she said.
“Every time I think about it, I’m like: how am I going to Parliament on Monday to debate whether future children are going to be disabled or not?”
Her words reflected her anger about the possible consequences of delayed diagnosis rather than a guarantee about the medical outcome of every baby.
Jesy said early treatment could dramatically change the development and quality of life of children born with SMA.
She contrasted that with the complex care that may be required when symptoms have already progressed, referring to breathing support, cough-assistance machines and repeated medical procedures.
“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,” she claimed.
“That is how life-changing this treatment is.”
She continued: “But if they don’t get this treatment and they don’t get the heel-prick test, they will go on to be disabled.”
Jesy said some children could later require significant respiratory and medical support.
“It never, ever ends,” she added.
The singer expressed disbelief that universal screening had not already been introduced despite what she described as three life-changing treatments becoming available during the past six years.
“I still can’t believe that in this day and age it’s still a thing,” she said.
“It’s still not here in England.”
Jesy welcomed the reported October rollout but said limiting it to selected regions failed to provide equal protection.
“How does that make sense?” she asked.
“How are we playing postcode lottery with children’s lives? How is that okay?”
According to the information shared in her post, areas currently expected to miss out include Bristol, Cambridge, Portsmouth, Leeds, Liverpool and Oxford.
Jesy said the location of a maternity unit should not determine whether a newborn is screened for a serious genetic condition.
“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, they’ll be disabled,’” she said.
“We’re not doing this anymore. We’ve made too much noise now for this to be ignored.”
She acknowledged becoming angry during the video but said her frustration came from imagining how different life might have been for her own daughters had their condition been identified immediately.
“It makes me so sad to think that my children’s lives could look so different,” she admitted.
“And not only my children’s lives, but so many other families and children are dealing with this across the whole of England.”
Jesy has previously shared intimate glimpses of the daily care required by Ocean and Story.
Images posted online have shown the twins with feeding tubes and medical tape, while their mother has discussed creating space at home for specialist equipment and therapy.
The girls recently celebrated their first birthday, with Jesy sharing photographs from the family occasion.
Her experience of caring for them has transformed the singer into one of the most prominent public campaigners for newborn SMA screening.
Alongside her video, Jesy wrote that the planned October programme represented “a huge step forward” but stressed that the remaining gap could not be accepted.
“It will only cover 72 per cent of England,” she said.
“That means some babies won’t be screened simply because of where they live.”
She continued: “A postcode lottery like that just isn’t fair. Every baby deserves the same chance. Every baby’s life matters.”
Jesy invited supporters to gather outside Parliament at 5pm on the day of the debate before she and campaign representatives entered the building.
She also urged followers to tag their local MPs and ask them to attend.
“Please, if you can, tag your MP in the comments and ask them to attend the debate and support universal newborn screening for SMA,” she wrote.
“No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity.”
Supporters flooded the comments with praise for Jesy’s determination.
One wrote: “This should be accessible everywhere. I wish I could be there to support.”
Another told her: “You have done a fantastic job. Thank you for raising awareness for SMA.”
A third simply said: “You’re changing lives.”
Other followers paid tribute to families and charities who had campaigned on the issue long before it gained widespread attention.
One supporter said the work carried out by Jesy and the SMA community could make a meaningful difference to children’s lives.
Another wrote that her efforts could be transformative for future babies and their families.
Jesy’s campaign follows an extraordinarily difficult period since the premature arrival of her daughters.
The singer has spoken openly about the shock of receiving their diagnosis and the emotional adjustment involved in caring for two babies with a serious condition.
Rather than withdrawing from public life, she has used her platform to raise awareness and place pressure on decision-makers.
Her petition’s success does not automatically guarantee that screening will become universal.
The parliamentary debate will allow MPs to discuss the issue and the Government’s approach, but further decisions may still be required before any national policy changes.
Nevertheless, securing the debate represents an important milestone for campaigners who say they have struggled for years to be heard.
Jesy made clear that she intends to continue fighting beyond Monday.
Her emotional video was not only an account of her family’s experience but an appeal on behalf of pregnant women and babies who may face the same diagnosis in the future.
“This is our future,” she said.
“These are future children we are deciding on.”
For Jesy, the issue is no longer an abstract debate about testing policy or regional healthcare arrangements.
It is about Ocean, Story and families whose lives can change following a single diagnosis.
Her language was raw, angry and sometimes absolute, reflecting the fear she has experienced as a mother.
But the central demand was simple: every newborn should be offered the same opportunity to be screened, regardless of their postcode.
As she prepares to enter Parliament alongside SMA campaigners, Jesy has already achieved something the community had long been seeking — forcing the subject into a national political debate.
Now she hopes MPs will listen and ensure that the planned screening programme reaches every part of England.
“We’ve made too much noise now for this to be ignored,” she said.
And after more than 150,000 people added their names to her campaign, Jesy Nelson appears determined not to stop until every baby is included.
