Former Little Mix singer Jesy Nelson has released a tearful seven-minute video expressing fury at MPs following Monday’s Westminster Hall debate on spinal muscular atrophy screening.
The 35-year-old, whose twin daughters Ocean Jade and Story Monroe were diagnosed with SMA Type 1, appeared visibly distressed as she criticised public health minister Sharon Hodgson for opposing a nationwide rollout of newborn testing.
“I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one, this awful disease, how heartbreaking it is to hear someone try and argue against why children with SMA, future children with SMA, should be denied of this,” Ms Nelson said.
The parliamentary discussion followed a petition launched by Nelson that gathered more than 150,000 signatures.
Ms Nelson’s central criticism focused on the government’s decision to exclude 28 per cent of newborns from the screening programme when it launches in October.
“So my question to Sharon is, if it’s safe enough for 72 per cent of England to get this test at birth, then why is it not good enough for the 28 per cent of England to not get tested at birth?
“How does that make any sense?” she asked.
The singer branded the partial rollout an unethical postcode lottery, arguing that a child’s future should not be determined by their birthplace.
“You are basically telling me that if you live in a certain postcode, you’re not as important as the other 72 per cent of England,” the singer stated.
She also revealed that after showing Ms Hodgson footage of two sisters with SMA who received different treatments, the minister admitted she had not fully understood the impact of early intervention.
Ms Nelson shared the devastating reality of daily life caring for her one-year-old daughters, breaking down as she described their medical needs.
“I have to give them medicine every four hours. I have to turn them every two hours, because they can’t do that themselves.
Jesy Nelson frequently shares updates about her baby twins
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INSTAGRAM“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, because this disease has affected their muscles with their swallowing,” she said.
The singer expressed profound grief over what might have been different with earlier diagnosis.
“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,” Ms Nelson added.
Public health minister Sharon Hodgson opposed a nationwide rollout of newborn testing
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She has previously stated that her twins will never walk due to irreversible nerve damage caused by late treatment.
The Department of Health and Social Care responded to the criticism, confirming that preparations are underway for a large-scale NHS trial beginning in October 2026, three months ahead of the original January 2027 schedule.
A spokesperson told PA: “Jesy and other campaigners have made a very powerful case on screening for spinal muscular atrophy, and we have heard that case.”
The department clarified that babies excluded from the evaluation are not being left out to form a control group, and ministers are actively exploring ways to expand coverage 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,” the spokesperson added.
GB News has contacted Ms Hodgson for a comment.
