Jesy Nelson has shared her fears that her twin daughters will one day be mad at her for not spotting the signs of their SMA sooner. 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. Ocean and Story weren’t tested for SMA, because the test is not yet routine for newborns across the UK.And now in heartbreaking scenes from her new Prime Video documentary, Jesy Nelson: Life Changing, Jesy shared her fears that they might one day be annoyed that she didn’t spot the signs sooner before they lost the opportunity for life-saving treatment. She said: ‘No one should ever have to go through this and it infuriates me that one day I’m going to have to have a conversation with them and say maybe this didn’t need to be this way and they’re going to have questions for me.’I don’t know, these are things that I have to battle with every day of like what are they going to ask when I’m older? Jesy Nelson has shared fears her twin daughters will be mad that she didn’t spot signs of their SMA sooner as she says she doesn’t want carers to look after her children’Are they going to be mad at me that I didn’t see the signs sooner and that I could have potentially given them a completely different life?’She continued: ‘That wasn’t what their life should have been. And I know people keep messaging me, going, “disabilities don’t define children,” and they don’t. ‘But I will never, I can’t accept that they could have been able to walk and run and live how a child should live.’That’s the part that I will never be able to f*****g accept and that is why I’m doing everything that I can to try and change this. ‘Because if I can stop other families from having to go through all of this s**t and hate that we have to go through, then I’ve done something good out of this horrendous experience.’Jesy also responded to comments she has received from people suggesting she is ‘rich’ and can just pay for carers to look after her daughters. ‘There’s so many comments like, “Well, she’s rich. She can get loads of helpers in, and she doesn’t even have to do any of this stuff.”‘And I don’t think people even understand. I don’t want to get strangers in to look after my babies. Ocean and Story weren’t tested for SMA, because the test is not yet routine for newborns across the UK’I have nothing against anyone that wants to do that. But my thing is that because of everything that happened from birth, I’m not over that yet. ‘I don’t want to just hand them over to anyone.’Elsewhere in the documentary Jesy shared how when she first found out about the diagnosis she felt as though ‘I am just going to be heartbroken for the rest of my life’. However after the twins’ first birthday she reflected: ‘The pain does get less. There is a reason that this is happening.’There is a whole community fighting to be heard and that is the reason.’The former Little Mix star has previously explained how she didn’t suspect there was anything wrong with her children’s development as doctors told her that because they were born premature they couldn’t be compared to other babies. And by the time the twins were diagnosed with the condition it was too late to give them the treatment to ‘save their legs’. ‘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.Earlier this month Jesy celebrated a milestone for one of her twin daughters as she shared a snap of her sitting upright in her wheelchair. Type 1 SMA means sufferers cannot sit, so Jesy was quick to mark the moment one of her daughters managed to sit upright in their chair with no medical tube. Taking to Instagram she penned: ‘She looks like such a big girl with no tube on her face and sitting up right in her chair’. Last month, Jesy shared she’d been left ‘heartbroken and outraged’ as she vowed to ‘keep on fighting’ after attending parliament for the MPs’ debate on SMA screening from birth.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 as it stands only 72 per cent of the country will have access to newborn screening when it is introduced in October, while the other 28 per cent still won’t. Leaving parliament Jesy fought back tears as she said: ‘I’m going to be completely honest, I was absolutely fuming. I feel so let down. ‘I have no more words. It’s sad. It’s so sad, like our children’s lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not. ‘Based on where you live, how does that make sense? How is that fair? How is that fair?’The parliamentary debate was prompted by a petition launched by Jesy, which gained more than 150,000 signatures.The staggered roll out has been introduced under the advice of the UK National Screening Committee who want to evaluate the effectiveness of the screening and the cost to the NHS. Among the areas that will miss out are Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth.The trial will involve seven of the 13 testing laboratories available to the NHS.What is spinal muscular atrophy? Spinal Muscular Atrophy (SMA) is a disease that weakens a patient’s strength by affecting the motor neuron cells in the spinal cord.It results in gradual muscle wasting and the severity of symptoms varies by type.Type 1 SMA is the most severe and is evident at birth. The weakening of muscles means sufferers cannot sit and usually leads to death by the age of five.Type 2 is intermediate with the sufferer being unable to stand.Type 3 is mild and makes it difficult to get up from a sitting position.Type 4 sufferers don’t have symptoms until they are in their 20s or 30s.