Jesy Nelson reveals daughters’ spinal braces in SMA screening campaign

Jesy Nelson shared a poignant glimpse into her twin daughters’ daily reality as she continues campaigning for universal newborn screening for spinal muscular atrophy (SMA) in England.

The singer posted a photograph of the spinal braces worn by her daughters, Ocean Jade and Story Monroe, ahead of a parliamentary debate on SMA screening, using the moment to highlight the impact the condition can have on affected children and families.

“Just a reminder that future SMA babies’ lives don’t need to look like this!” Nelson wrote alongside the image. “These are Ocean and Story’s spinal braces that now have to wear every day.”

She also shared details of the debate taking place in Parliament, encouraging supporters to attend and help raise awareness of the issue.

Campaign for Universal SMA Screening

Nelson has become a prominent advocate for newborn SMA screening since her daughters were diagnosed with SMA Type 1 after being born prematurely in May last year.

The former Little Mix star has spearheaded a petition calling for SMA to be included in routine heel-prick testing for all newborns in England. The campaign has attracted more than 150,000 signatures, securing a parliamentary debate on the issue.

In an emotional video shared with followers earlier this week, Nelson described her frustration with what she called an unfair “postcode lottery” that could determine whether children receive early diagnosis and treatment.

She argued that babies who receive treatment shortly after birth can experience dramatically different outcomes compared with those whose diagnosis comes later.

‘No Baby Should Miss Out’

While welcoming plans to begin SMA screening in parts of England later this year, Nelson said she remains concerned that the programme will not initially cover the entire country.

According to the singer, the rollout is expected to begin in October but will initially reach only around 72% of England, leaving some regions without access to routine screening.

“No baby should miss out because of their postcode,” she wrote. “Every baby’s life matters.”

Nelson urged supporters to contact their local MPs and back efforts to expand screening nationwide, saying every newborn should have the same opportunity for early diagnosis and treatment.

A Personal Mission

The campaign has become deeply personal for Nelson, who has frequently shared updates about Ocean and Story’s health journey since their diagnosis.

In her recent message, she reflected on how different her daughters’ lives might have been if screening and treatment had been available from birth, while also drawing attention to other families facing similar challenges.

The parliamentary debate marks a significant milestone for campaigners who have spent years pushing for universal newborn SMA screening.

As lawmakers prepare to discuss the issue, Nelson said she hopes the debate will help ensure future babies have access to early testing regardless of where they are born.