Jesy Nelson has shared an emotional update on her campaign for newborn SMA screening, admitting her “heart feels super heavy” as Scotland became the first nation in the UK to test babies for the condition.
The former Little Mix star, 34, has been tirelessly calling for SMA1 screening to be introduced in England after her twin daughters were diagnosed with the rare muscle-wasting disease. While the development in Scotland marked a major step forward, Jesy made clear that the moment was also painful for her family.
Taking to Instagram, she wrote: “Today my heart feels super heavy. It’s a very bitter sweet moment today knowing that Scotland has become the first UK nation to screen babies for SMA.
“We’re so close yet so far.
“I will never be able to understand why we are still not testing for it in England.
“To know that my girls lives and so many other children in England could look so different if this had of been there for them.
“But never the less I will keep fighting and pushing for change because nobody should ever have to go through this heartache.”
Alongside the post, Jesy also shared a touching video of her daughter Ocean sitting up, proudly telling followers: “She’s proving everyone else wrong,” while adding that they are “going to get there.”
The singer has become one of the most vocal public figures campaigning for change, pushing for the heel prick test to include SMA screening so babies can be diagnosed and treated as early as possible. Her petition recently passed 100,000 signatures, meaning the issue will now be debated by MPs in the House of Commons.
Jesy’s twin girls were born prematurely at 31 weeks in May last year and were later diagnosed with the most severe form of the rare condition. The star has spoken openly about the devastating reality of their diagnosis and her belief that earlier testing could have changed their future.
Her family’s journey is also set to be explored further on screen, with a second series of Jesy Nelson: Life After Little Mix already confirmed for Amazon Prime Video. The new instalment will focus on the health battle facing her daughters and Jesy’s fight to raise awareness.
Jesy, who found fame after Little Mix was formed on The X Factor, left the group in 2020. In recent interviews, she has also spoken candidly about past struggles with her mental health during that period of her life.
