Jesy Nelson has expressed fury at MPs after a parliamentary debate on spinal muscular atrophy (SMA) screening, accusing Health Minister Sharon Hodgson of arguing against a full rollout. The former Little Mix singer, 35, broke down in tears as she shared a seven-minute video recounting her visit to parliament, where Hodgson opposed the campaign.
Campaign for newborn screening
Jesy has been advocating for all newborns to be screened for SMA, a rare condition causing progressive muscle wastage, after her twins Ocean Jade and Story Monroe Nelson were diagnosed. She claims the current limited rollout is unethical, as it means 28% of babies will not be screened, calling it a 'postcode lottery'.
In the emotional video, Jesy said: 'I listened to clinicians, experts, families, MPs all give their arguments as to why this is so important to be rolled out across the whole of England. So my question to Sharon is, if it's safe enough for 72% of England to get this test at birth, then why is it not good enough for the 28% of England to not get tested at birth? How does that make any sense?'
Heartbreaking video shown to MP
Jesy revealed she showed a video to Hodgson after the debate, featuring two sisters both diagnosed with SMA but receiving different treatments. One sister was in a wheelchair, while the other could run. Jesy said the video surprised the minister, who did not realize the full impact of early treatment.
'How do we have a health minister standing up in Parliament arguing why this should not be rolled out across the whole of England, when she doesn't even know how life-changing this treatment is?' Jesy added. 'I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one. You are basically telling me that if you live in a certain postcode, you're not as important as the other 72% of England.'
Personal hardships shared
The video ended with Jesy heartbreakingly describing the daily challenges of caring for her daughters, whom she shares with ex Zion Foster. 'I cannot tell you how heartbreaking it is to know that my children's lives could have looked completely different. They could have been walking by now. They didn't have to be on breathing machines, they didn't have to have coughing machines,' she said.
'I have to give them medicine every four hours. I have to turn them every two hours, because they can't do that themselves. I have to make sure they're not choking. I have to watch them so closely to make sure that they don't choke on their own saliva.' She added: 'To know that there are people that are literally making this decision to make children suffer. I have no words. When are we going to get answers, and when is this going to change, because this cannot go on.'
Government response
A Department of Health and Social Care spokesperson said: 'Jesy and other campaigners have made a very powerful case on screening for spinal muscular atrophy, and we have heard that case. Planning is under way for a large-scale trial across the NHS, where hundreds of thousands of babies will be screened for SMA from October – three months earlier than planned – to help build the evidence base needed to support a national screening programme.'
'The babies who aren't currently included in the evaluation are not being excluded to form a 'control group'. The government is considering options to extend the programme further across the country. We hope families can feel reassured that progress is being made, with more treatments available for spinal muscular atrophy than ever before – we want to see more children with SMA not just surviving but thriving.'
