How tragic pal helps Jesy Nelson with ‘never-ending’ heartbreak after sick twins’ health takes a turn for the worse

THE devastating reality of raising twins with a life-limiting condition has taking a huge toll on Jesy Nelson. But now she has revealed a secret strategy which she has kept from fans, that is helping her cope. The former Little Mix star opened up about how she’s dealing with her twins’ health taking a turn for the worse – admitting it’s “got her through” her lowest of times since her one-year-olds Ocean Jade and Story Monroe were diagnosed with Spinal Muscular Atrophy Type 1. Jesy Nelson broke down in tears over her guilt about not spotting the SMA signs in her twins Credit: instagram/@jesynelson Jesy’s twins Ocean and Story have Spinal Muscular Atrophy Type 1 Credit: Instagram/Jesynelson Last month The Sun told how, at the girls’ most recent three-month review at St Ormond Street’s Children’s Hospital, doctors warned they are not responding to treatment the way they had hoped. It came days after she said she “can’t stop crying” over her “bittersweet” victory to change Government policy to test all babies in England with SMA – knowing it came too late for her twin daughters. Now Jesy says she is using the devastating death of her friend’s child to combat fears she’ll be “heartbroken every day for the rest of her life” – after admitting she’s struggling to cope with her daughters’ prospects. The 35-year-old told The Sun in an emotional interview: “One thing I constantly remind myself – and I think about it every single time I go to Great Ormond Street – is that there are always people worse off than you. “I’ve got someone really close to me who lost their little girl and the pain that I feel for her every day… “She would give anything to have her little girl back, whether she had what the twins have or whatever. “I have to remind myself that, yes, I’m in this situation and it’s f***ing hard, it’s heartbreaking, but it could be worse. “I just have to be grateful that my girls are still here and they are happy and I still get to see them every day. “That is what gets me through. Genuinely, that is what I have to just remind myself every day.” Jesy’s fight to add screening for spinal muscular atrophy to the NHS newborn blood spot test featured in her new Prime Video documentary, Jesy Nelson: Life Changing. Every year 50 babies born with the condition will now find out they carry the genetic condition at birth. It means they can be given treatment before nerves and muscles are damaged beyond repair. During the 60-minute programme, Jesy broke down in tears over the guilt she carries and worries her children will blame her, when they’re older, for not spotting the signs sooner. The late diagnosis means the girls will most likely never be able to walk and will have problems breathing, eating and drinking on their own. Jesy said it was a “tough pill to swallow” and she struggles to accept the diagnosis. “I constantly battle between manifesting they’re going to defy the odds and trying to come to accept that that may not happen. “It’s a really weird position to be in because you you think ‘well, if that doesn’t happen, am I just going to feel heartbroken for the rest of my life?’ Jesy Nelson: Life Changing documentary features the singer revealing her guilt over her twins’ health issues Credit: Amazon It is feared Jesy’s girls will never be able to walk Credit: Instagram/JesyNelson “Then you worry, if I accept it, am I also manifesting that?” She added: “Another friend of mine whose friend lost a child gave me advice, which I thought was really poignant. “Basically he said, ‘you can’t live your life feeling heartbroken if it doesn’t happen’. “He pointed out ‘you’re never going to enjoy the special moments with your girls because you’re constantly going to be thinking, ‘but I want this and I wish this had happened.’ “I’ve really tried to make peace with that. It’s a constant mind battle.” Jesy now has to face both twins needing further operations – as well as Story being diagnosed with scoliosis, the abnormal curvature of the spine in an S-shape. After recent test results, she told us: “Unfortunately, some of the numbers have gone down. We had a long discussion and there’s a possibility they may have to go back on treatment, which is just heartbreaking.” The girls – who are on feeding tubes – will both undergo an op soon to repair trauma to their nose and throat. The 35-year-old has been working tirelessly for the SMA community Credit: Shutterstock Editorial Jesy says her girls ‘are the happiest babies in the world’ Credit: Instagram Doctors will find an alternative way to feed the girls to avoid further damage. Meanwhile Story will have to have an operation every six months because of her scoliosis. “It’s never-ending,” added Jesy. Asked how she copes on her toughest days, Jesy said: “I don’t really get a lot of time where I get to be by myself, but I think music is one of the biggest forms of therapy. “So if I have to go to the shops, and my mum is obviously looking after the girls, I’ll get in my car and that’s one of my favourite times because I can blare out my music, which I never get to do. “It’s the best and I just find it so therapeutic.” A phased rollout to enforce SMA screening in England will begin in October 2026, but Jesy’s fight doesn’t end there. She is continuing to raise awareness of the condition because the screening won’t be available in other parts of the UK. “I hope as many people as possible see the documentary because I wanted to raise as much awareness as I could about it and the signs to look out for”, added Jesy. “As amazing as the rollout is, Northern Ireland and Wales are still not part of the heel-prick test, meaning many babies will still be undiagnosed and not treated in time. “I’m just praying that if they watch this documentary, they will spot the signs early enough, take them to the doctor and get them treatment.” Jesy Nelson: Life Changing is available exclusively on Prime Video. Jesy with Little Mix’s Leigh-Anne Pinnock (far left), Jade Thirlwall (left) and Perrie Edwards (far right) Credit: Getty Jesy Nelson: Life Changing is out on Prime now Credit: Amazon Spinal Muscular Atrophy: Signs and symptoms Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord. This causes an individual to lose the ability to walk, eat and breathe. There are four types of SMA – which are based on age. Type 1 is diagnosed within the first six months of life and is usually fatal. Type 2 is diagnosed after six months of age. Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair. Type 4 is the rarest form of SMA and usually only surfaces in adulthood. What are the symptoms? The symptoms of SMA will depend on which type of condition you have. But the following are the most common symptoms: • Floppy or weak arms and legs • Movement problems – such as difficulty sitting up, crawling or walking • Twitching or shaking muscles • Bone and joint problems – such as an unusually curved spine • Swallowing problems • Breathing difficulties However, SMA does not affect a person’s intelligence and it does not cause learning disabilities. How common is it? The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA. Usually, the parent would not have the condition themselves – they would only act as a carrier. Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA. If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy. It affects around 1 in 11,000 babies.