Jesy Nelson has shared an emotional update about her twin daughters, admitting her heart has been “broken into a million pieces” as soaring temperatures make their daily treatment even more difficult.
The former Little Mix star, who shares Ocean Jade and Story Monroe with musician Zion Foster, opened up about the heartbreaking reality of caring for the girls during the UK’s latest heatwave.
Ocean and Story, who were born at 31 weeks and five days, were diagnosed with Type 1 spinal muscular atrophy (SMA) in January 2026. The rare genetic condition affects muscle strength and mobility, and doctors believe the twins are unlikely to develop the ability to walk.
Posting a video of her daughters on Instagram, Jesy explained the painful challenge they face every day while wearing specialist spinal jackets and splints designed to slow the progression of the condition.
Writing alongside the clip, she said: “I’ve cried all day. Imagine having to wear a spinal jacket and splints in this heat. I cannot even begin to tell you how much this breaks my heart into a million pieces.
“But if I don’t put them in these every day, their spines and feet will only deteriorate and get worse. These will never correct their spine or feet, it will only prevent it from getting any worse.
“Once again, no future SMA babies need to suffer like this if they are given a heel prick test and treatment from birth!”
Her emotional post quickly drew an outpouring of support from fans and celebrity friends.
Love Island star Dani Dyer commented: “Oh Jesy. You are doing amazing,” followed by two heart emojis.
Billie Shepherd wrote: “Sending you all so much ❤️❤️. Super mumma. You are amazing.”
Actress Chelsee Healey added: “You are amazing! Precious, beautiful baby girls,” while former Love Island contestant Shaughna Phillips described Jesy as a “warrior mama.”
Fans also expressed frustration that earlier diagnosis and treatment could potentially spare future families from facing similar struggles.
One supporter wrote: “It’s crazy to think that all of this could have been prevented. These two angels wouldn’t need to suffer. May God continue to give you all strength and heal the twins.”
Another added: “I am sending you so much love. The fact this could have been prevented if they had testing in place… is heartbreaking.”
Despite the emotional setback, Jesy recently celebrated a significant milestone after one of her daughters was able to sit upright in her wheelchair without the breathing tube covering her face.
Sharing the proud moment online, she wrote: “She looks like such a big girl with no tube on her face and sitting upright in her chair.”
According to the NHS, children with Type 1 SMA are unable to sit unsupported and often experience severe feeding and breathing difficulties.
Since revealing her daughters’ diagnosis, Jesy has become one of the most prominent campaigners calling for universal newborn SMA screening across England.
Last month, after attending a parliamentary debate on newborn SMA testing, she admitted she was left devastated by the outcome, as only around 72 per cent of babies are expected to have access to the screening programme when it begins in October.
Fighting back tears after the debate, Jesy said: “I’m going to be completely honest, I was absolutely fuming. I feel so let down.
“I have no more words. It’s sad. It’s so sad, like our children’s lives could look so different, and to know that we are still debating it.
“We are debating whether SMA’s future children should be disabled or not. Based on where you live, how does that make sense? How is that fair? How is that fair?”
