Jesy Nelson has slammed the government for the delay in approving SMA testing for all UK-born babies during her appearance on This Morning on Friday.
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.
And after months of tirelessly campaigning, Jesy announced this week that the SMA Type 1 screening test will now be rolled out across the whole of the UK.
However, Jesy voiced her anger at the delay it took for the screening test to be rolled out as she fumed ‘it should not have taken me to come along for it to happen’.
Speaking to This Morning hosts Dermot O’Leary and Alison Hammond about the ‘bittersweet’ moment, Jesy explained: ‘I don’t know what to say. Yesterday I couldn’t stop crying.
‘As proud as I feel, it was also a bittersweet moment. At the end of the day, I am super proud. This isn’t just me, this has been going on for years now.
‘I feel so proud that everyone got behind it.’
She added: ‘Wales and Northern Ireland still don’t have it. Why would I stop here? It would feel wrong to just stop at England now.
Jesy Nelson has slammed the government for the delay in approving SMA testing for all UK-born babies
The mother-of-two revealed in January her now 14-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition
‘The noise that everyone rallied together, you can’t ignore it. It should have never taken for me to come along to be taken seriously, this has been going on for years. People have being trying to take this to Parliament.’
Speaking in Parliament before the testing was ruled out, politician Sharon Hodgson said the remaining six laboratories ‘do not currently have the requisite equipment’ for testing. ‘If that changes, more labs could be included,’ she added.
Later Jesy addressed her followers over on Instagram as she reflected on the disappointment of the day and called out Sharon, who is the Parliamentary Under-Secretary of State in the Department for Health and Social Care for the decision.
She told her viewers: ‘There is factual evidence that this treatment, if given from birth, is completely life changing to a child that is diagnosed with SMA.
‘If it isn’t, and they get left untreated, there are facts that if your child doesn’t get treatment, they will not see their second birthday. They will die before the age of two. And there were families in that room yesterday that had children that have died from this horrendous disease.
‘And we had the Health Minister Sharon give her argument against why it should not be rolled across the whole of England.
‘So my question to Sharon is, if it’s safe enough for 72 per cent of England to get this tested at birth, then why is it not good enough for the 28 per cent of England to not get tested at birth? How does that make any sense?
‘Her exact words were, “need to make sure that this does more good than harm”. Please tell me how that statement makes any sense.’
Jesy went on to explain that she spoke to Sharon after the debate and asked her whether she had ever met a child with SMA, to which Sharon said she hadn’t.
The singer then showed Sharon a video of sisters Maisie and Amelia, who both have SMA however one was treated from birth and the other wasn’t.
She explained that they have the exact same diagnosis but one is in a wheelchair but the other is running along, pulling her sister along.
This week, Jesy announced the SMA Type 1 screening test will now be rolled out across the whole of the UK as a result of her campaigning’ (pictured with CEO of SMA UK Giles Lomax)
However, Jesy voiced her anger at the delay it took for the screening test to be rolled out as she fumed ‘it should not have taken me to come along for it to happen’
Jesy continued: ‘When I showed her in this video, her exact words were, “Wow, is that what the treatment does? Wow”. She was gobsmacked.’
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’.
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.
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.
Jesy said: ‘I feel super proud that my girl’s 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’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.’
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