Jesy Nelson will look on in Parliament as MPs debate whether to test all newborns for spinal muscular atrophy (SMA) as she opens up about her twins’ devastating diagnosis
Jesy Nelson is heading to Parliament(Image: INSTAGRAM)
Jesy Nelson is heading to Parliament as MPs prepare to debate whether to test all babies for a deadly muscle wasting disease.
The former Little Mix singer joined forces with the Mirror to launch a petition which has now been signed by 150,000 people demanding all newborns are checked for spinal muscular atrophy (SMA). The 34-year-old has highlighted how late diagnosis of her own one-year-old twins meant they began treatment too late after irreversible nerve damage was done. She has been told they will never walk.
The Mirror is campaigning for all newborn babies to be tested for SMA so they can be given new treatments which are effectively a cure – but only if administered at birth.
The UK National Screening Committee had refused to roll out 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.
Jesy and the Mirror are demanding demanding change and it comes after the late diagnosis of her twin girls Ocean and Story. They were diagnosed with the condition only at six months, despite repeated visits to the GP and healthcare visitors checking in on them. By this point irreversible damage had been done.
The debate, triggered by Jesy’s e-petition to Parliament, will take place from 6pm on Monday.
An NHS pilot testing most newborn in England at birth had been delayed for years but former Health Secretary Wes Streeting intervened after meeting Jesy so that its start date has been brought forward from January 2027 to October this year.
However under current plans over 160,000 newborn babies a year will remain untested to form a “control group”. Mr Streeting had vowed to push the UK National Screening Committee to investigate whether this was necessary and see whether all babies get the check. However two months ago Mr Streeting resigned as health secretary leaving the fate of these babies in limbo.
Jesy will be joined by Giles Lomax, chief executive of charity SMA UK, whose eight-year-old twins Finn and Zara have SMA. Giles told the Mirror: “Today is a big day for the community as MPs will be debating what the future looks like for those babies born with SMA.
“With plans already in place for the Inservice evaution to start in October, whilst we are delighted to have a date, we believe that not screening the full country just isn’t right.
“No baby should be excluded based on their postcode. We are calling on MPs to represent their constituents and ensure that the expansion to screen all babies is introduced as soon as possible.”
The planned pilot will see an estimated 404,000 babies tested in a phased rollout in England but 163,000 newborns will remain untested to compare outcomes – a situation experts have branded “unethical”. It means an estimated 11 babies a year will still be diagnosed too late.
‘Without screening, many babies are diagnosed too late’
The devolved government in Scotland has taken the decision to start screening all babies for SMA. No such decision has been made in Wales and Northern Ireland where all 47,000 newborns will remain untested annually.
Three treatments currently available on the NHS can either correct the faulty gene or provide a replacement for the key protein so that muscles do not die off. They are effectively a cure – but only if administered at birth before irreversible muscle damage.
The Mirror has been highlighting the SMA testing scandal since 2021. On average, 48 SMA babies a year are currently given the devastating late diagnosis after irreversible disability has 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 fed via a tube directly into the stomach.
Jesy Nelson’s e-petition to be debated in the House of Commons states: “We urge the UK Government to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test. SMA is a rare genetic condition with devastating consequences if not treated early. Every baby should be screened at birth to allow early diagnosis and access to life-changing treatment.
“SMA was one of the leading genetic causes of infant mortality: up to 90% of untreated babies either died before age two or required permanent ventilation. It is now treatable, but treatment is most effective before symptoms appear. Early diagnosis can give babies the chance at a life without severe disability.
“Without screening, many babies are diagnosed too late. The damage already caused to their mobility, breathing and swallowing cannot be reversed. Scotland has committed to piloting SMA newborn screening this year. All babies should have the same chance. No child should suffer avoidable harm.”
Disclaimer : This story is auto aggregated by a computer programme and has not been created or edited by DOWNTHENEWS. Publisher: mirror.co.uk
