Jesy Nelson, formerly a pop star, is urging the NHS to implement screenings for a rare genetic disorder in newborns. This plea comes shortly after she disclosed that her infant daughters have been diagnosed with a progressive muscle-wasting condition.

At 34, Nelson, who rose to fame as a member of the X Factor-winning group Little Mix, expressed on This Morning that she feels a “duty of care” to increase awareness about spinal muscular atrophy (SMA). Her goal is to help other parents detect the condition early.

Recently, Nelson revealed that her twins, Ocean Jade and Story Monroe, born in May to her and fiancé Zion Foster, have been diagnosed with SMA1. This severe form of the disease means they are unlikely to ever walk.

Tragically, if her daughters had been screened for SMA at birth, they could have received gene replacement therapy, potentially reversing the condition and allowing them to lead a normal, healthy life.

Nelson is advocating for SMA to be included in the NHS’s existing newborn blood spot screening, commonly known as the heel prick test.

This screening, conducted on babies at five days old, involves a blood test to identify nine rare yet serious health conditions. However, SMA, which affects approximately 70 children born in the UK each year, is not currently included.

The UK is a global outlier in relation to newborn SMA screening, which is currently in place within the United States (in all states bar Nevada and Hawaii), Russia, Turkey, Qatar, Taiwan and Ukraine. 

Furthermore, all babies born in France, Germany, Switzerland, Portugal, Denmark, Belgium, Norway, Czech Republic, Slovakia, Lithuania, Latvia, Estonia and Hungary are tested.

Jest Nelson is campaigning for SMA to be added to the NHS’ heel prick test 

Other countries, such as Australia, Canada, Japan, Finland and Spain either offer the test regionally or are running pilot programmes with a view of rolling out screening nationwide. 

Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK. 

There are four types of SMA, with 1 being the most severe – and frustratingly, the most crucial to catch early.

Giovanni Baranello, Professor of Paediatric Neuromuscular Disorders, Honorary Consultant in Paediatric Neuromuscular Diseases at Great Ormond Street, where Nelson’s twins were diagnosed, told the Daily Mail that timing really is everything.

He said:  ‘Type one is the most severe form where you have an early onset, usually in the first few months after birth. 

‘Typically these children, without any treatment, will never acquire any major motor milestone, like sitting unsupported or standing or walking and they will just start to deteriorate progressively and to lose their strength.

‘Before we had the approval of gene therapy and the other treatments these children used to pass away before the age of two.’ 

However, Professor Baranello added that the latest cutting edge treatment, which delivers a functional copy of the missing SMN1 gene straight into the baby’s body, can save a child from a lifetime of disability, and their parents needing to provide 24-hour care. 

Miss Nelson’s twins were born prematurely in May 2025

SMA is a genetic condition, which can be reversed if diagnosed shortly after birth

He said: ‘If they are treated immediately, in a few days, even sometimes one or two days after birth, they can be “normal”.’ 

Without access to newborn screening, a diagnosis can only take place once symptoms appear, which is usually within the first six months, at which point the damage caused to the baby’s muscles is irreversible. 

As a result, even once treatment is initiated, most babies diagnosed with SMA will never walk independently, and many will need mechanical ventilation, nutritional support and 24/7 care.

Nelson’s daughters have since undergone gene therapy, but she admitted that it came too late to guarantee them a ‘normal’ life, and merely stopped the disease from progressing. 

She said: ‘They’ve had treatment now, thank God, that is a one-off infusion.

‘It essentially puts the gene back in their body that they don’t have and it stops any of the muscles that are still working from dying. But any that have gone, you can’t regain them back.

‘We’ve been told that they will probably never walk. They’ll probably never regain their neck strength. They are going to be in wheelchairs. 

‘I just want to reiterate that if this is caught from birth, it’s just life-changing.

”I could have prevented this from happening if I’d have seen a video and caught it early enough.’ 

In 2018, the UK National Screening Committee (NSC) recommended against including SMA in the list of diseases screened for at birth. 

They cited a lack of evidence which could show how effective a screening programme would be, limited evidence of how well the test for the condition performs, and a general lack of information about the total number of people affected by SMA. 

Five years later, in 2023, the NSC announced that they would reassess newborn screening for SMA, and the following year they announced they were planning a pilot research study to evaluate whether SMA should be added to the list of diseases screened for at birth. 

It’s not just children who pay the price for a lack of SMA screening; the cost of caring for critically disabled children also becomes the responsibility of the NHS. 

Research from drugs manufacturer Novartis estimates that between 2018 and 2033, the cost to the NHS of not screening for SMA will top £90m, and condemn 480 children to a ‘sitting state’. 

On Tuesday, Health Secretary Wes Streeting told ITV news he backed the singer’s move to challenge the screening process for the rare genetic condition, and said she was ‘right to challenge and criticise how long it takes to get a diagnosis’.