Jesy Nelson says 'I feel so proud' as she celebrates a huge win in her SMA campaign and confirms screening test will now be rolled out across the whole of the UK

Jesy Nelson has revealed her joy as she announced the SMA Type 1 screening test will now be rolled out across the whole of the UK as a result of her campaigning. 

Sharing the latest update exclusively with the Daily Mail Jesy said she was 'so proud' of everyone involved as she celebrated the difference this will make to babies with SMA as she added 'this is all I ever wanted'. 

The mother of two, 35, revealed in January her now 14-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition.

Revealing the news, Jesy said: 'OK, so yesterday I had a phone call with Sharon [Hodgson], the health minister, and James Murray [Secretary of State for Health and Social Care] and they have decided to roll it out across the whole of the UK.

'It's an emotional day. I'm still taking it in to be honest. It’s amazing. It's just mind-blowing. I feel so proud. I just feel so proud of everyone that's been a part of getting it to this place because now future SMA baby’s lives are gonna look completely different. And that is all I ever wanted.

'It will never not be heartbreaking to hear that your child has SMA, but to know that their life will not have to look like this is just amazing.'

Last month Jesy headed to Parliament for a debate on whether a newborn screening for the disease would be rolled out across the whole of England. 

Devastatingly the result of the debate was not what Jesy and the SMA community had hoped for and the decision remained that only 72 per cent of the country would have access to newborn screening when it is introduced in October, while the other 28 per cent still wouldn't.  

However the Government have now confirmed the expansion of the scheme that will see hundreds of thousands of babies screened in the roll-out which will begin in October this year. 

SMA can leave babies unable to sit up, crawl or walk. In the most severe cases, it stops them breathing or swallowing but caught early enough treatment can significantly improve outcomes for affected children.

Testing works through a simple heel prick to collect a small sample of blood from the baby, taken shortly after birth.

Explaining how proud she is that her daughters' story has paved the way for change, Jesy continued: 'I feel super proud that my girls' story has been a part of change and I can't wait when they're a bit older and they understand to be able to tell them that.

'I've always said I want this to be their little superpower and I feel now, when they understand, I can let them know that.'

After the initial decision in Parliament last month, Jesy was seen fighting back tears as she told interviewers: 'I'm going to be completely honest, I was absolutely fuming. I feel so let down.' 

And reflecting on the emotional day she told the Daily Mail: 'I'm such a big manifester. I really believe if you put your mind to it and you put it out there you can make it happen. 

'But I think obviously when I went to Parliament and they said that they weren't going to roll it out across the whole UK, I was devastated. I was absolutely devastated. 

'So yeah, yesterday it was just the best news ever. I feel super proud of everyone. The whole of this SMA community, there's so many people that have been behind getting it to this place, not just me.

'I really don't want to take all the credit for this. I've played a part in it, but there's also been people behind the scenes that maybe haven't been named, and they also deserve massive credit for this because it's taken a whole community of people to get it to here.'

The SMA screening evaluation will begin across England in the autumn, and the programme is moving faster than originally planned. 

Labs are set to start testing babies for SMA from October 2026, three months ahead of schedule, after the government committed to speeding up the rollout earlier this year. 

Secretary of State for Health and Social Care, 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.'

Meanwhile Chief Executive Officer of SMA UK Giles Lomax 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.'