All newborn babies in England will be tested for a devastating muscle wasting disease in a huge win for the Mirror and Jesy Nelson.
The former Little Mix singer demanded all babies be checked at birth for spinal muscular atrophy (SMA) after her own twins were diagnosed too late after irreversible nerve damage and told they will likely never walk. Now the government has agreed to screen all newborns in England in a major victory for the Mirror’s campaign.
Jesy said: “Today is a day of hope. This is a victory for every family affected by SMA, whilst it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families.
“It’s an overwhelming feeling I can’t really explain, to be honest. I just feel quite emotional. And I’m so grateful to the Mirror. When you go to your petrol garage, people that may not follow me necessarily on Instagram but they’ll see the newspaper… and it’s bringing so much awareness.”
The landmark change will prevent dozens of SMA children each year from enduring lifelong disability including being fed via a tube directly into the stomach and needing help to swallow. The Mirror has been highlighting the SMA testing scandal since 2021 when we first reported that on average 48 babies a year were getting the devastating diagnosis too late after irreversible disability had occurred. Of these 28 have the most severe SMA Type 1 which often results in children requiring a machine to breathe at night and needing to be “peg fed” into the stomach.
Jesy Nelson, 34, joined forces with the Mirror to campaign for change from January this year after twin girls Ocean and Story were diagnosed with SMA Type 1. They were diagnosed only at six months, despite repeated visits to the GP and healthcare visitors checking in on them.
Jesy and her mum were adamant something was wrong after noticing the infants had stopped moving their legs. By the time they had the SMA diagnosis confirmed irreversible nerve damage had been done so that muscles had wasted away.
Health Secretary James Murray said: “No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference. I’m in awe of the campaigners who’ve worked tirelessly to raise awareness of this rare but very serious genetic condition. We’re moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment.”
Jesy joined forces with the charity SMA UK which had for years demanded all babies be screened for the condition. She launched a petition, promoted in the Mirror, which was signed by 150,000 people and debated in Parliament.
Giles Lomax, chief executive of SMA UK, said: “This is a watershed moment. We are hugely grateful for all that the Mirror have done to magnify this campaign and bring it to public attention. It’s made a huge difference to be able to get this across the line and make the public aware that there are people living with SMA and what they go through.”
Jesy added: “Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I’m incredibly proud to have supported.”
The UK National Screening Committee had refused to recommend the £5 blood test for SMA on the NHS since 2018 despite the emergence of drugs that could effectively cure the disease before it takes hold. An NHS pilot testing most newborn in England at birth had been delayed for years but following a meeting between Jesy, Giles and former Health Secretary Wes Streeting, the government agreed to bring its start date forward from January 2027, to October this year.
However the committee insisted upon a nationwide pilot to test 404,000 newborns a year, but leave 163,000 newborns untested to act as a control group to compare outcomes – a situation experts have branded “unethical”. Today’s change means that from October 2027 the remaining six English areas will start screening so that every newborn is tested.
SMA UK boss Giles Lomax’s own twins Finn and Zara were diagnosed late with SMA in 2019 – exactly a year after the government initially rejected screening. He said: “I’m hugely proud of the SMA community for never giving up. It’s too late for those of us living with SMA, for my twins and for those we must not forget who have died from the condition, but we have changed the future for SMA kids.
“If someone screened is diagnosed they will be able to live with no symptoms of SMA. They will never have to go through what we went through.”
The devolved government in Scotland has already taken the decision to start screening all babies for SMA but, crucially, no such decision has been made in Wales and Northern Ireland where all 47,000 newborns will remain untested annually.
Giles added: “We will not stop until we get full coverage. We won’t take our foot off the gas until every single baby in the UK is screened.”
Michelle Kane, screening director at NHS England, said: “The courage Jesy Nelson has shown in sharing her family’s experience and campaigning for other families is truly remarkable.”
Andy Fletcher, chief executive of Muscular Dystrophy UK said: “This is a landmark moment for the SMA community. With a condition like SMA time is everything and this development will be life-changing for future generations of children.”
What is SMA?
One in every 10,000 babies are born with SMA and it is passed from parents to their children through a faulty version of the Survival Motor Neuron 1 or SMN1 gene. The SMN1 gene should stimulate the production of SMN protein that maintains the health of the nerve cells helping transmit signals between the brain and spinal cord and the muscles.
Without this protein these nerve cells, called motor neurons, die off and so the muscles — particularly in the legs, chest and arms — don’t get the message to move and waste away. Nerve cells die off in a matter of days so even short delays in treatment can result in severe disability.
Before 2019, UK babies with SMA type 1 often wouldn’t survive until their second birthday, and infants with the milder type 2 would never walk, facing life in a wheelchair as well as multiple surgeries and respiratory infections. One in 40 people carry the faulty SMN1 gene – around 1.7 million carriers in the UK. Carriers do not have SMA but if two have a baby, there is a one in four chance their baby will have SMA.
What can be done once babies are diagnosed?
There are now three treatments that stop the disease progressing that have been approved on the NHS. The first, Spinraza, is injected around the spine every four months, and works by encouraging the body to produce more SMN protein.
Zolgensma, given as a one-off injection, carries a healthy copy of the SMN1 gene to the brain and nerve cells, where it delivers the SMN protein. And Evrysdi is taken as a liquid every day for life to increase the production of the SMN protein.
What is the heel prick test?
The Newborn Blood Spot Test sees five-day-old babies have their heel pricked to collect four drops of blood on a special card. The UK only checks for nine out of a potential 50 serious health conditions including such as cystic fibrosis. This compares to 48 in Italy, 36 in Russia, 31 in Austria and 29 in Poland and Portugal.
There is already a newborn check for SMA in 65% of EU countries including Poland and Macedonia as international evidence showed it prevented lifelong disability and death. Ukraine even urgently rolled out screening at a time of war.
James Murray – Secretary of State for Health and Social Care
Every parent dreams of bringing a healthy and happy baby into the world. But for some families, those first few months and years can be overshadowed by the devastating news their child has a rare genetic condition. In some cases, a condition parents and clinicians could have acted swiftly on, had they known sooner.
A life-changing diagnosis is hard to process, but to discover more could have been done in those critical early months to support and protect their child’s health – that’s almost too much to bear.
That was certainly the experience of singer Jesy Nelson, when she received the heartbreaking news her twin daughters had been diagnosed with spinal muscular atrophy (SMA).
SMA is a rare genetic disease which causes nerve cells controlling the muscles to deteriorate. It leads to muscle weakness and, over time, difficulty with mobility, breathing and swallowing.
There is currently no cure. But if identified quickly enough, there are treatments and therapies which can help significantly improve and prolong quality of life. That’s why we’re taking an important step forward by expanding newborn screening for SMA.
From October – rolling out across the NHS in England – checks for SMA will be added to the simple heel-prick test offered for babies shortly after birth. If SMA is detected before symptoms appear, treatment can begin sooner, giving children the best possible chance of living full, active and healthy lives.
I pay tribute to Jesy for her openness, courage and determination in taking up the cause.
I would also like to thank Giles Lomax, chief executive of SMA UK, whose children were diagnosed in 2018, and to the many other campaigning parents and groups, including Muscular Dystrophy UK and UK SMA Newborn Screening Alliance, for shining a light on this important issue.
While it is true that rare conditions affect relatively small numbers of people, together they touch millions of lives. Every family supporting a loved one’s rare condition deserves to be seen, listened to and supported. Their experiences can help shape the future of care, as much as those directly affected.
And this expanded evaluation of newborn screening will build the evidence needed for a safe national rollout and, longer term, help improve quality of care, wherever parents and families with new babies live.
This government is determined to give every child, parent, and family the best start in life, leaving nobody behind, and raise the healthiest generation of children ever.
