Lewis Atkinson

I beg to move, That this House has considered e-petition 755980 relating to spinal muscular atrophy and the newborn screening test. It is a pleasure to serve with you in the Chair, Mr Mundell, and a privilege to open the debate as a member of the Petitions Committee. I want to begin with two little girls. In May last year, twin daughters were born prematurely to the petitioner, Jesy Nelson, who is a constituent of the hon. Member for Broxbourne (Lewis Cocking). Several months later, they were diagnosed with spinal muscular atrophy type 1, which is the most severe form. Their mother was told that they would, in her words, “probably never walk”. In January of this year, Jesy chose to share that diagnosis publicly, saying that it would be “selfish to keep this to myself and not potentially save a child’s life.” This petition is the result, and I pay tribute to her for the way that she has courageously told her story, using her own unique reach. As a result, the petition was signed by 149,692 people, including 225 of my constituents in Sunderland Central. I was grateful to meet Jesy earlier in Westminster Hall, and I thank her and every family who has turned the hardest experience imaginable into a campaign for other people’s children. In preparing for this debate, I also met Giles Lomax of SMA UK, Muscular Dystrophy UK, and Professor Francesco Muntoni of the Neuromuscular Centre at Great Ormond Street. I thank all of them for their time, and I also thank the Petitions Committee staff for their help as I prepared for this debate. SMA is a rare genetic condition that attacks the motor neurones, causing progressive muscle weakness. Around 1,500 people in the UK live with it and about 48 babies are born with it each year—roughly one a week. With type 1 SMA, symptoms appear within the first six months and the effects are profound. Children cannot hold up their heads or sit unsupported; they may be tube-fed and need help to breathe. Until recently, up to 90% of untreated babies either died before the age of two or required permanent ventilation. I used the past tense there deliberately and happily, because the important fact in this debate is that SMA is no longer untreatable. There are now three disease-modifying therapies in this country, including a one-time gene therapy that did not exist a decade ago. They are approved by the National Institute for Health and Care Excellence, and funded by the NHS. A condition that was too often a death sentence for babies is now one that we can treat.