Jesy Nelson has described the confirmation of the rollout of baby SMA screenings in the UK as 'a day of hope'. The former Little Mix singer revealed in January that her twin daughters, Ocean and Story, both aged 14 months, had been diagnosed with SMA Type 1, a rare genetic condition causing progressive muscle weakness.
Campaigning for Change
Jesy has spent months campaigning for the condition to be added to the newborn blood spot screening test, as early treatment can help avoid some of its most devastating effects. Her journey is documented in her new Prime Video series, Jesy Nelson: Life Changing, which premieres on Friday, July 17.
Just one day before the series airs, the Department of Health announced on Thursday, July 16, that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year. Hundreds of thousands of babies will be screened via the simple heel prick blood test shortly after birth.
Jesy's Reaction
Sharing her delight at the news, Jesy said: 'After years of campaigning, it means so much to see the heel prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test.'
'Today is a day of hope. 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.'
'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.'
Postcode Lottery Concerns Addressed
Taking to Instagram last month, Jesy had expressed concern that the initial October rollout would 'only cover 72% of England', calling it a 'postcode lottery'. She stated: 'That means some babies won't be screened simply because of where they live. A postcode lottery like that just isn't fair. Every baby deserves the same chance, every baby's life matters.'
The new development means all parts of England will be covered by the evaluation, which will inform future recommendations on testing newborns by the UK National Screening Committee.
Expert and Charity Reactions
Giles Lomax, chief executive officer of Spinal Muscular Atrophy (SMA) UK, said: 'After years of campaigning by the SMA community and our partner organisations, this is a hugely important step forward.'
'When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment. We are delighted to see the confirmation that the remaining six screening laboratories will begin screening from October 2027, this demonstrates a clear commitment to making newborn screening available across England.'
'No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons. We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point, and we look forward to the day when every newborn across the whole of the UK is offered this simple, life-changing test.'
Health Secretary's Statement
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.'
'This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities.'
'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.'
Impact of SMA and the Screening Programme
SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing. Early diagnosis through screening allows for timely treatment that can prevent irreversible disease progression.
Aoife Regan, director of impact and charitable programmes at Great Ormond Street Hospital Charity, noted: 'This is a hugely positive step for babies and families and follows years of tireless campaigning by the SMA community.'
'Early diagnosis can be life-changing. With effective treatments now available, identifying SMA before symptoms appear gives babies the best chance of timely treatment and can help prevent irreversible disease progression.'
'At Great Ormond Street Hospital, teams provide specialist and wraparound care for children with SMA and their families following what is often a devastating diagnosis. Screening has the potential to transform that journey for future families.'
'It is now vital that this rollout happens without delay, becomes a permanent part of newborn screening in England, and that every baby diagnosed with SMA can access treatment as quickly as possible.'
