Jesy Nelson has spoken out in an emotional and deeply personal statement following new developments in newborn screening for Spinal Muscular Atrophy (SMA).
The former Little Mix star, now 34, welcomed her twin daughters, Ocean and Story, in May with her ex-partner Zion Foster. Just months later, she revealed the devastating news that both babies had been diagnosed with the rare and severe condition.
SMA attacks the motor nerve cells in the spinal cord, gradually weakening the muscles. The most aggressive form, Type 1, is also the most common — and without treatment, many children are not expected to live beyond two years.
Although SMA can be detected early through a simple heel-prick test, it is not currently included in routine newborn screenings in all parts of the UK. Determined to change that, Jesy launched a campaign that gathered more than 100,000 signatures, pushing for the test to be introduced nationwide.
This week, Scotland became the first region in the UK to roll out screening for SMA in newborns — a milestone that Jesy described as both hopeful and heartbreaking. She admitted the news left her with a heavy heart, knowing that earlier testing could have dramatically changed her daughters’ future.
In an emotional message, she shared her frustration that such screening is still unavailable in England, saying it’s painful to imagine how many lives — including her own children’s — could have looked different with earlier detection. Still, she vowed not to stop fighting, insisting no family should have to endure the same pain.
Jesy has continued to openly document her twins’ journey, giving a raw glimpse into the reality of living with SMA. In a recent video, she revealed that Ocean and Story will now need to wear leg splints to help correct the positioning of their feet — a moment she described as both tender and heartbreaking.
Holding the tiny splints, decorated with hearts and butterflies, she couldn’t help but notice how sweet they looked — yet the sight was also a painful reminder of everything her daughters are facing.
Despite the grim prognosis, Jesy remains determined to turn her pain into purpose. She has chosen to continue filming her Prime Video series, hoping her story will raise awareness and spark real change — so that in the future, other families might be spared this kind of heartbreak. 💔
