Jesy Nelson has revealed that she’ll be heading to Parliament on Monday for a debate on ‘life-changing’ SMA screenings – as she tearfully blasted the ‘postcode lottery’ of the October roll-out of the NHS scheme.The singer, 35, revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition.The late diagnosis means her daughters are likely to never be able to walk and have specialist equipment to help them breathe at night as well as feeding tubes.The singer has campaigned tirelessly for the NHS to expand its screening to check for spinal muscular atrophy after birth following her own experience with her daughters – and now thanks to her effort from October the screening will begin. In May Jesy shared the news that the UK Government had confirmed that the petition to add SMA to newborn screening in England will be debated in Parliament on 22 June.However, ahead of the debate she took to Instagram on Friday to share how she was feeling, saying that there was still more to be done as the screening scheme will ‘only cover 72% of England.’ Jesy Nelson has revealed that she’ll be heading to Parliament on Monday for a debate on ‘life-changing’ SMA screenings – as she tearfully blasted the ‘postcode lottery’ of the roll-out The singer, 35, revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting conditionShe penned: ‘We have had some amazing news that screening is due to start in October this year, which is a huge step forward!’But there’s still a big problem… it will only cover 72% of England. That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair. Every baby deserves the same chance every babies life matters!’On Monday 22nd June, the petition will be debated by MPs in Parliament. I’ll be there alongside Giles from SMA UK and we’re hoping this debate will help push for screening to be available for every newborn across England.’We’ll be arriving at 5pm on Monday, and it would mean so much to see as many of you there as possible. We’d love to get a photo together outside Parliament before we head inside’Please if you can, tag your MP in the comments and ask them to attend the debate and support universal newborn screening for SMA. No baby should miss out because of their postcode. Let’s keep fighting until every newborn has the same opportunity. Thank you for standing with us every step of the way!’She then said in the video: ‘I know some of you will know I have been trying to get SMA as part of the heel prick test here and because of you guys the signatures got over 150,000.’And because of that it is going to be debated in Parliament this Monday which is just crazy because we did that! And this has never got this far before. It’s been ignored for so long but you guys made enough noise and you supported it.’And if they get the treatment from after birth the treatment is so life-changing, you wouldn’t even know they had SMA. But if they don’t they will go on to be disabled.’It is being rolled out in October but only in certain parts of England. Why are we playing postcode lottery with children’s lives? This is about our children’s futures. We are playing with children’s lives and it is not okay.’It makes me feel so sad that my children’s lives could have looked so different…’. Ahead of the debate she took to Instagram on Friday to share how she was feeling, saying that there was still more to be done as the screening scheme will ‘only cover 72% of England’ In May Jesy shared the news that the UK Government had confirmed that the petition to add SMA to newborn screening in England will be debated in Parliament on 22 June The NHS currently carries out ‘heel prick’ tests on babies at around five-days-old to check for just 10 treatable conditions, including cystic fibrosis The news comes following calls demanding the health secretary to overrule the committee’s guidance and make effective treatment more accessible on the NHS.Last month, Jesy shared her joy as the NHS announced they would roll out ‘heel prick’ testing on newborns for SMA.Despite the UK’s National Screening Committee rejecting calls to introduce checks for another muscular disease in January, Wes Streeting announced plans for more than 400,000 babies to be screened for the condition from October 2026.Celebrating the news, Jesy took to her Instagram and wrote: ‘A big step forward for SMA, ISE have announced to start screening for SMA in England will now begin in October 2026. I am so proud as this is a major milestone for the SMA community’. The pilot will see an estimated 400,000 babies tested in England. The NHS currently carries out ‘heel prick’ tests on babies at around five-days-old to check for just 10 treatable conditions, including cystic fibrosis. In a letter addressed to the singer and Giles Lomax, chief executive of SMA UK, Streeting said: ‘At our meeting I committed to seeing whether the in-service evaluation of SMA screening could be implemented faster and cover a wider geographical areas. ‘I am pleased to confirm that [screening] will now start in October this year rather than January 2025 as previously planned.’Jesy previously told the Daily Mail the medical procedures her babies must endure each day leave her feeling like she’s hurting them as they cry and scream.She described caring for the twins as an emotional rollercoaster, with some days being ‘really f***ing s***’ and others slightly lighter. Jesy and ex-partner Zion never expected to be caring for their babies in such a way, and Jesy says having to provide for their medical needs is a daily struggle.She said: ‘Every day is so full-on – I can speak about it, but I’ll never be able to explain how intense it is until you see it.’Speaking to Jamie Laing on his Great Company podcast, Jesy said she is hopeful that her babies will defy the odds now that they are receiving treatment and go on to have a longer life expectancy.She explained: ‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body.’Their muscles are now deteriorating and wasting away, and if you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.’It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation… And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.’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.