Former Little Mix singer Jesy Nelson has left Health Secretary Wes Streeting visibly emotional during a powerful meeting where she begged for urgent changes to newborn screening for a devastating muscle-wasting disease.
A Mother's Heartbreaking Campaign
The 34-year-old star broke down as she described the recent diagnosis of her eight-month-old twin daughters, Ocean Jade and Story Monroe, with Spinal Muscular Atrophy (SMA) Type 1. The girls were identified as having the condition at 18 months old, a delay Jesy believes has robbed them of crucial early intervention.
Appearing on ITV's This Morning, the heartbroken mother explained that her daughters now require round-the-clock care and are likely to be wheelchair-bound for life. She stated that an earlier diagnosis could have offered a chance to 'save their legs'.
Currently, the heel prick test given to newborns across the UK does not screen for SMA, a rare genetic condition that causes progressive muscle weakness and atrophy. Early detection and pre-symptomatic treatment can largely prevent the disease's most severe effects.
An Emotional Plea for Change
During the meeting, which was filmed for This Morning, Jesy passionately challenged the Health Secretary. 'No parent should have to go through this,' she sobbed, questioning why it took a celebrity with a large platform for the issue to gain serious attention.
'It's just madness to me that we are living in a day and age now where we have got treatments that are life-changing and [SMA] is still not part of the heel prick test,' she told Mr Streeting.
The Labour MP, 42, was seen struggling to hold back tears, particularly after watching a video of a child affected by SMA. He admitted he had not been fully aware of the advances in testing until Jesy's campaign.
'I'll be a dog with a bone on this,' Mr Streeting vowed, pledging to investigate whether an ongoing evaluation of SMA screening could be accelerated and expanded. The UK National Screening Committee's review is not due to report until January 2028.
Life After Diagnosis
Jesy gave a raw account of how her life has transformed since the twins' diagnosis. Her home now 'looks like a hospital,' filled with medical equipment including breathing machines, cough assists, and feeding tubes.
'I just want to be their mum, I don't want to be a nurse,' she emotionally shared, detailing the intensive care she has had to learn. She credited her own mother for spotting the early signs of reduced leg movement in the twins, which ultimately led to the diagnosis.
The singer has launched a petition to get SMA Type 1 added to the routine newborn blood spot screening. She insists that sharing her family's private pain is a duty, driven by the hope of preventing other families from enduring the same ordeal.
'I could have saved their legs... I'm going to shout to the rooftops about this,' she declared.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy is a rare genetic disease that weakens muscles by affecting motor nerve cells in the spinal cord. Type 1 is the most severe form, with symptoms including extreme muscle weakness, swallowing difficulties, and respiratory issues.
The NHS states that while the condition worsens over time, medicines and treatments can help manage symptoms. Crucially, if treated at or near birth, the disease can be largely prevented, allowing children to develop with minimal or no symptoms.
Jesy's campaign comes after the UK National Screening Committee last ruled out routine screening in 2018. The committee is now re-evaluating the evidence.
The emotional meeting underscores a growing pressure on the government to close a gap in neonatal healthcare that campaigners argue is leaving children with preventable, life-altering disabilities.
