Our beautiful children have the same devastating illness as Jesy Nelson’s twins… but a simple £5 test when he was a baby could have changed everything

When former Little Mix singer, Jesy Nelson, told the world the devastating news her eight-month-old twins had been diagnosed with the rare genetic condition, Spinal Muscular Atrophy (SMA), her fans were shocked.

Commonly known as ‘floppy baby syndrome’, the condition affects around 60 babies born in the UK every year.

Although currently incurable, recent pioneering gene therapy can halt progress of the disease, which attacks and kills off proteins in an infant’s nerves.

The result is the baby is unable to lift its head, sit up, crawl or even swallow.

Its breathing is affected, and without medical intervention, the child will not be expected to live past its second birthday.

In the wake of her children’s tragic diagnosis, the Little Mix star has joined the ranks of other devastated parents urging the NHS to change course. 

Nelson, 34, says she feels that she has a ‘duty of care’ to raise awareness of spinal muscular atrophy (SMA) in the hopes that other parents can catch it early.

On Sunday, she and her fiance Zion Foster announced they were battling SMA1, the most severe form of the disease, which has afflicted their two twins Ocean Jade and Story Monroe, who are tragically unlikely to ever be able to walk.  

Heartbreakingly for the couple, had their children been tested for SMA at birth, they could have undergone gene replacement therapy treatment which would have reversed the condition and allowed them to enjoy a normal, healthy, life.

Nelson is now campaigning for the condition to be added to the NHS’ newborn blood spot screening test, also known as the heel prick test.

The test is offered to every baby at five days old, and involves taking a blood sample to find out if they have one of nine rare but serious health conditions, but at present SMA, which affects around 70 children born in the UK every year, isn’t one of them. 

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.

In the wake of the Little Mix’s star’s heartbreaking revelation, the Mail spoke to two mother’s who have been on the frontline of this game changing reform for years.  

Mother of two, Amy Williams, 36, has a five-year-old son, Ollie who, like Jesy’s twins has Type 1 SMA, which usually appears in the infant around six months after birth, although sometimes earlier.

Ollie has problems with his breathing and is hooked up to an oxygen machine at night, fed through a tube and is wheelchair-bound.

He was diagnosed with the condition at three months old.

Amy says: ‘Having a severely disabled child is very challenging. Ollie needs continual attention and, like Jesy’s twins, is fed by a tube to his stomach.

‘He is only able to sit up with the aid of a body brace and move around using a specially adapted wheelchair. He also wears spiral support ankle robotics to keep his legs and feet from turning outwards.’

Reflecting on Ollie’s diagnosis at 11 months old, Amy adds: ‘It was during the Covid lockdown and I was on a group chat with other new mums, when the newborn professional saw him lying on the carpet and became concerned at his lack of movement, just the same as Jesy’s twin girls’ floppiness.’

She was advised to take Ollie to A&E, where he was diagnosed with the SMA condition. He was initially treated with the drug, Zolgensma having infusions every four months at a cost of £75,000.

The medication is administered to help stop further damage to nerves in the patient’s muscles.

In August 2020, when he would have needed another dose of the drug, the consultant recommended a new gene therapy called Spinraza, which uses a virus to get the immune system reacting to the drug.

This one-off drug became available on the NHS costing £1.79M and is the same drug that Jesy Nelson’s babies have been given.

‘It was a difficult time,’ continues Amy, ‘We had to isolate before and after the Spinraza infusions but it’s a one-off treatment, without the need for any other drugs.’

‘If Ollie had been given a simple heel prick test – the very thing we’ve been campaigning for since 2022, the outcome would have been much, much better as treatment can begin within days of birth.

‘A simple heel prick test, costing around £5 per newborn, could save parents like us and Jesy Nelson the heartache of having to go through all this and I’m really glad she’s getting firmly behind our campaign, which I pray will bring about positive change.’

Currently, most of Europe, Russia, U.S.A., Australia, Japan and even Ukraine test newborns with the heel prick test. Sadly the UK is left lagging far behind.

However, there is some suggestion a new Thames Corridor pilot scheme could start in 2027 in this country, but in the meantime, more and more babies will be denied vital treatment in time to prevent irreversible damage.

‘I’m the lucky one,’ enthuses Amy, ‘When I became pregnant with my second child, seven-month old Hailey, I was tested for SMA and had an amniocentesis test after 16 weeks, as well as being re-tested after she was born and fortunately the results were negative.

‘She is a joy to all of us, especially her doting big brother, Ollie who – despite his disabilities, is a happy, intelligent and cheeky little boy who loves school and whose favourite subject is Maths.’

Another mother of two, Cat Powers, 34, whose second child, sixteen- month-old Charlie also has the genetic SMA condition.

Her and her husband, Chris are tech advisors from America and moved to the UK for their work seven years ago. They now live in Hampton, South West London.

After two years of living here they welcomed their first child, Aggie, now a healthy five year-old girl, so the couple thought nothing of having a second baby four years later.

Following a normal pregnancy, Charlie was born with a slight problem, a ‘clicky hip’ which Cat was told to keep an eye on.

It was not until some four weeks later she noticed he wasn’t moving his legs much.

‘I couldn’t remember if Aggie had moved her legs much at the same age and thought it was that I’d just forgotten key stages over the years since having her,’ said Cat.

‘One night I was feeding Charlie – he was about four weeks old, I fell asleep and when I awoke his body and head were flopped over. I thought I must have caused it.’

By the time Charlie was eight weeks old, he started having problems feeding and was unable to hold his head up during tummy time.

Hubby, Chris recalled: ‘I noticed Charlie’s breathing was quite laboured, so we decided to take him to A&E.’

Hospital blood tests revealed the little boy had SMA Type 1, (the same as Jesy Nelson’s girls).

He was initially put onto a ventilator and given a daily dose of an aural drug, Risoliplan to boost the proteins in his muscle nerves. At this time he was very weak and needed his strength built up in order to be given the same gene therapy as the Nelson twins.

At three months, Charlie was given the infusion, paid for by the NHS at a cost of £1.79m.

Cat continues: ‘I still feel very guilty that we chose to travel to the UK for work and to start a family because if we’d have had the babies in the US, they would have been tested at birth under its medical regime.

‘Charlie would have had his infusion a few days after he was born and his nervous system would have been in far better shape. ‘

However, the cost of the same treatment in America is $2M per child and many families do not have insurance to cover such a condition.

‘We’re so very grateful to the NHS for funding our son’s treatment,’ said Chris.

Cat has great admiration for Jesy Nelson going public about her daughters and empathises with the terrible initial shock she must have experienced.

‘I can understand everything she’s said in public, because these are the same emotions I’ve been through. You just want to be a mum, not a nurse and full time carer, ‘ she said.

She explained she had joined an SMA support group – like Amy Williams, because it helps give advice and shared experiences of other mums.

The group, SMA UK has been campaigning for more than two years for all newborns to have the heel prick test at a cost of just £5 per child to the British taxpayer.

Despite members writing to their MPs, organising petitions and lobbying various health secretaries, including Wes Streeting, no progress has been made to date.

Cat said ‘I’m hoping that now Jesy is calling for the heel prick test to be implemented immediately, finally some action will be taken by the government.’

Meanwhile – like Jesy is experiencing, Charlie’s needs take over her life, from ventilators throughout the night and endless hospital appointments, to daily physiotherapy sessions.

The family has a room packed full of specialist mobility equipment to cater for Charlie’s needs.

‘I understand completely how Jesy feels that her home has been turned into a hospital,’ said Cat.

Charlie is, despite his disabilities, a beautiful, happy baby able to do more for himself than Cat could ever have hoped for.

He’s able to feed himself without the tube; he plays with his toys and is starting to talk. In addition – with the help of special leg supports and an adapted table, he’s trying to weight bare.

Finally, Cat reflected: ‘His outcome could’ve been even better if his condition had been diagnosed at birth with a £5 heel prick test, but he is a joy and continues to exceed my initial expectations.

‘My message to Jesy is, your baby girls will surprise you too.’

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’.

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