Jesy Nelson struggled to hold back her tears as she said her daughters’ SMA battle is a ‘never-ending, life-changing situation’ that never gets easier. The singer, 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, meaning they will never be able to walk. And after letting cameras in on her life to record the reality of her day to day life from the time of the diagnosis, Jesy gave an update on her daughters’ health as she revealed Story has also been diagnosed with scoliosis, the abnormal curvature of the spine in an S-shape. Speaking to The Daily Mail ahead of the release of her new Prime Video documentary, Jesy Nelson: Life Changing on Friday, the star gave an update on the reality of her day to day. ‘I wish I could say, “Oh, it’s easier now,” but it’s not. And that’s the really heartbreaking thing about this diagnosis. It’s not like, “oh, they get their treatment and then it all goes away.”‘It’s a never-ending, life-changing situation.’ Jesy Nelson has said her daughters’ SMA battle is a ‘never-ending, life-changing situation’ as she reveals Story has been diagnosed with scoliosis and both twins need further operations Ocean and Story are also having to undergo an operation to alter the way they are fed as now they are getting older their feeding tubes are causing too much trauma Jesy then revealed Story has now been diagnosed with scoliosis which means she will need an operation every six months. The twins are also having to undergo an operation to alter the way they are fed as now they are getting older their feeding tubes are causing too much trauma. She explained: ‘They’re having an operation soon because obviously they’re on feeding tubes and the girls basically keep pulling them out because they’re causing so much trauma to their nose and throat.’So they’ve now got to have an operation where the food goes into their tummy, because they can’t have this tube down their throat anymore because it’s causing so much trauma. ‘And then Story, she’s got scoliosis and she’s going to have to eventually have an operation on her spine, and she’ll have to have that done every six months.’ Struggling to contain her emotions, Jesy continued: ‘Sorry I’m getting upset. There’s just so much that I don’t think people even know goes on but that’s why I wanted to make this documentary because I feel like it only gives a small insight into what families have to go through on a daily basis.’That’s why I wanted to make change so that no family has to ever go through this again.’They’ll get the diagnosis and that will still be heartbreaking, but to know that if they could get the treatment from birth and know that their life will be completely different it is life changing, it really is.’She added: ‘I also want my girls to know that this is their little superpower. I want them to grow up and know that this doesn’t define them, and know how brave they are and resilient and that they are a massive part of change.’Jesy’s documentary was released on Friday, however the star revealed she finds it difficult to watch and has only watched it in full once. The singer revealed in January her now 14-month-old twins had been diagnosed with SMA Type 1, a rare muscle-wasting condition, meaning they will never be able to walk’I’ve only watched it once because it’s too hard for me to watch. This is my everyday life. I think because I’m on autopilot 24/7, because it’s my normal now and then when it’s crammed into an hour and you’ve got to watch it, you kind of look back and think I can’t believe that’s my life.’Obviously I go to hospital appointments every week, but then when you see how much you’re actually doing and what my babies are actually having to go through, it’s a lot to have to watch back.’Confirming the signs for new parents to look out for she explained: ‘So I’d say the first one is, the floppiness. Obviously they’ll come a certain time when your baby will be able to support their head so if they are able to support themselves. ‘And they’re breathing, they breathe from their bellies. They have an unusual shaped belly. They call it a bell-shaped belly, so they’ll go in at their ribs, and then they’ll go out in their tummy.’Obviously, you know, no leg movement. I think one of the big things is that there’s very, very small movement. ‘Majority of babies kick their legs frantically from birth, and obviously mine did, but then I think you see in the beginning of the doc, you see that they would kick their legs, and then just literally rapidly, like in a month, they stopped moving and they’re the key things to look out for is that their movement decreasing over time.”Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms,’ according to the NHS website.Since opening up about the diagnoses of her daughters, Jesy has been campaigning for testing to become standard for newborn babies across the country – after it was last ruled out in 2018 by the UK NSC.And it has now been confirmed that the SMA Type 1 screening test will now be rolled out across the whole of the UK, marking an incredible milestone for the SMA community.It will begin later this year and hundreds of thousands of babies will be screened thanks to the expansion of the scheme.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.Sharing the news with the Daily Mail Jesy said: ‘OK, so yesterday I had a phone call with Sharon, the health minister, and James Murray 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 babies life’s 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.’What is scoliosis? Scoliosis is the abnormal curvature of the spine in an S-shape.Signs include a visible curve in the spine, one shoulder or hip being more prominent than the other, clothes not hanging properly and back pain.Pain usually only affects adults with the condition.In most cases, the cause of the scoliosis is not known but it can be caused by cerebral palsy and muscular dystrophy.In the UK, scoliosis affects three to four children could of every 1,000.It is also thought that as many as 70 per cent of over 65s have some degree of scoliosis.It is more common in women than in men.Most children with the condition do not require treatment as it is mild and corrects itself as the child grows.However, in severe cases the child may need to wear a back brace until they stop growing.Occasionally, a child needs surgery to straighten their spine.In adults, it is usually too late to treat the condition with a back brace or surgery so treatment revolves around reducing pain.Source: NHS Choices