Jesy Nelson slams the government for delay in approving SMA testing for all UK-born babies and says ‘it shouldn’t have taken me to come along for this to happen – it’s been going on for years’

Jesy Nelson criticized the government for a delay in approving SMA testing for all UK-born babies during an appearance on This Morning on Friday.

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

After months of tireless campaigning, Jesy announced this week that SMA Type 1 screening testing will now be rolled out across the UK.

But Jesy expressed anger at the delay in starting the screening test, saying ‘I shouldn’t have had to come along for this to happen’.

Speaking to This Morning hosts Dermot O’Leary and Alison Hammond about the ‘bittersweet’ moment, Jesy said: ‘I don’t know what to say. I couldn’t stop crying yesterday.

‘As proud as I was, it was also a bittersweet moment. At the end of the day, I’m super proud. This isn’t just me, it’s been going on for years.

‘I’m proud that everyone is behind this.’

He added: ‘We still don’t have this in Wales and Northern Ireland. Why should I stop here? It would be wrong to stop only in England now.

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

‘You can’t ignore the noise of everyone coming together. I should never have had to come and be taken seriously, it’s been like this for years. People are trying to bring this to Parliament.’

Speaking in Parliament before the tests were rejected, politician Sharon Hodgson said the remaining six laboratories ‘do not currently have the necessary equipment’ for testing. ‘If this changes more laboratories may be involved,’ he added.

Jesy later addressed her followers on Instagram as she reflected on the disappointment of the day and called out Sharon, the Parliamentary Under-Secretary of State at the Department of Health and Social Care, for the decision.

He told his audience:’There is real evidence that this treatment, if given from birth, completely transforms the life of a child diagnosed with SMA.

‘There are facts like if it is left untreated and left untreated your child will not see his second birthday. They will die before they are two years old. And yesterday in that room there were families whose children were dying from this terrible disease.

‘And we got Health Secretary Sharon to present her argument as to why this shouldn’t be rolled out to the whole of England.

‘So my question to Sharon is: If it’s safe enough for 72 per cent of England to have it tested at birth, then why isn’t it good enough for 28 per cent of England not to have it tested at birth? What does this mean?

‘His exact words were: ‘We need to make sure this does more good than harm.’ Please tell me how meaningful this statement is.’

Jesy revealed that she spoke to Sharon after the argument and asked her if she had met a child with SMA. Sharon said she had not met him.

The singer then showed Sharon a video of sisters Maisie and Amelia, who both have SMA but one was treated from birth and the other was not.

They say they have exactly the same diagnosis but one He is in a wheelchair, but the other one is running, pulling his sister with him.

This week Jesy announced that as a result of her campaign the SMA Type 1 screening test will now be available across the UK’ (pictured with SMA UK CEO Giles Lomax)

But Jesy expressed anger at the delay in starting the screening test, saying: “I shouldn’t have had to come along for this to happen.”

Jesy continued: ‘When I showed him this video his exact words were: ‘Wow, that’s what the treatment does? Wow’. He was surprised.’

Sharing the latest update exclusively with the Daily Mail, Jesy said she was ‘so proud’ of everyone involved as she celebrated the difference it will make for babies with SMA, adding ‘it’s all I’ve ever wanted’.

Announcing the news, Jesy said: ‘Okay, I had a phone call with Sharon yesterday. [Hodgson]health minister and James Murray [Secretary of State for Health and Social Care] and they decided to expand it to the whole of the UK.

‘An emotional day. To be honest, I still accept it. This is great. This is just mind blowing. I’m so proud. I’m so proud of everyone who was a part of getting here because now the future SMA baby’s life will look completely different. And that’s all I wanted.

‘It will never be heartbreaking to hear that your child has SMA, but it’s truly wonderful to know that their life won’t have to be this way.’

Last month, Jesy appeared in Parliament for a debate on whether newborn screening for the disease should be rolled out across England.

Devastatingly, the outcome of the debate was not what Jesy and the SMA community had hoped for, leaving only 72 per cent of the country with access to newborn screening when it was introduced in October, with a further 28 per cent still not.

However, the Government has now confirmed that the program is being expanded, which will see hundreds of thousands of babies screened, with the rollout starting in October this year.

SMA may prevent babies from being able to sit, crawl, or walk. In the most severe cases, it stops breathing or swallowing, but intervention early enough can significantly improve outcomes for affected children.

The test is done by using a simple heel prick to collect a small sample of blood from the baby shortly after birth.

SMA screening evaluation will begin across England in the autumn and the program is progressing faster than originally planned.

Laboratories will start testing babies for SMA from October 2026, three months earlier than planned, following the government’s pledge to accelerate 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 can make a big 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 is another step in the right direction as we do all we can to reduce health inequalities.

Jesy said: ‘I’m so proud that my daughter’s story has been part of the change and I can’t wait when they’re a little older and understand being able to tell it to them.’

‘I admire the campaigners who work tirelessly to raise awareness of this rare but very serious genetic condition. ‘We are moving faster and expanding screening more widely to ensure children receive the best treatment from the earliest possible time.’

Meanwhile, SMA UK Chief Executive Giles Lomax said: ‘After years of campaigning by the SMA Community and our partner organisations, this is a very important step forward.

‘When screening for SMA in newborns begins in October this year, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment.

‘We are pleased to see 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 the postcode lottery when every untreated day can lead to irreversible loss of motor neurons.

‘We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us get to this point, and we look forward to the day when every newborn across the UK will be offered this simple, life-changing test.’