Jesy Nelson has shared a touching family milestone that gave fans a rare moment of hope during her daughters’ ongoing battle with spinal muscular atrophy (SMA).
The former Little Mix star, 35, took to Instagram on Tuesday to proudly reveal that one of her one-year-old twin daughters had managed to sit upright in her wheelchair without her feeding tube attached—a moment that meant far more than it might appear.
“She looks like such a big girl with no tube on her face and sitting upright in her chair,” Jesy wrote alongside the heartwarming photo.
For most children, sitting up is a natural developmental step. But for babies diagnosed with SMA Type 1, the most severe form of the rare muscle-wasting condition, it represents an extraordinary achievement.
A Powerful Moment After Months of Heartbreak
Jesy and her partner Zion Foster revealed earlier this year that their twin daughters, Ocean and Story, had both been diagnosed with SMA Type 1 shortly after birth.
Since then, the singer has documented the realities of caring for children with the condition while becoming one of the UK’s most prominent campaigners for universal newborn screening.
Her latest update comes just weeks after an emotional appearance at Parliament, where she urged ministers to introduce newborn SMA testing across the whole of England.
Jesy Nelson celebrated her daughter sitting upright in her wheelchair amid her SMA battle in an Instagram snap on Tuesday
The singer, 35, revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition
“I Was Absolutely Fuming”
Following the parliamentary debate, Jesy admitted she left feeling “heartbroken” and “outraged” after learning that the screening programme will initially cover only around 72 percent of newborns when it begins later this year.
Fighting back tears outside Parliament, she questioned why access to life-saving early diagnosis should depend on where a baby is born.
“Our children’s lives could have looked completely different,” she said.
“We’re debating whether future children with SMA should have the chance to avoid lifelong disability simply because of their postcode.”
Why Early Diagnosis Matters
Jesy has repeatedly highlighted medical evidence showing that babies treated immediately after birth can experience dramatically better outcomes than those diagnosed later.
During her campaign, she shared examples of children with the same diagnosis whose lives have taken completely different paths depending on how quickly treatment began—one requiring a wheelchair while another is able to walk and play.
The singer also revealed the demanding reality of caring for her daughters, explaining that they require constant monitoring, medication every four hours, regular repositioning throughout the day and night, and careful supervision to prevent choking because the disease affects swallowing muscles.
Turning Pain Into Purpose
Although disappointed by the outcome of the debate, Jesy has vowed not to stop campaigning until every baby has equal access to newborn SMA screening.
Her petition calling for nationwide testing attracted more than 150,000 signatures and helped bring the issue before MPs.
Now, while continuing to fight for change, she is also celebrating every precious victory at home—including the simple but deeply meaningful moment of seeing her little girl sitting proudly in her wheelchair.
For Jesy, it was more than a photograph. It was another reminder of her daughters’ remarkable strength—and another reason to keep fighting for families affected by SMA.
