Jesy Nelson has shared a sad update on her twin daughters, who live with spinal muscular atrophy (SMA) and have to wear spinal suits, despite the blistering heat
Jesy Nelson has shared a sad update on her twin daughters
Jesy Nelson said her heart has been “broken into a million pieces” in an update over her daughters. The singer shares twin daughters, Ocean Jade and Story Monroe, with fellow musician Zion Foster.
As the UK basks under its third heatwave in just a matter of weeks, it presents an additional struggle for Story and Ocean. Writing over her video, the singer 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 daughters, who were born at 31 weeks and five days, were diagnosed with spinal muscular atrophy (SMA) in January 2026, meaning it is unlikely that they will develop the ability to walk.
Since sharing the news of her daughter’s diagnosis, Jesy has continued to update fans on their condition and earlier today, shared a devastating announcement. Taking to Instagram in view of her 9.5million followers on Instagram, Jesy shared a video of her two daughters in their bouncy chairs.
Jesy’s post, which has been liked thousands of times, was soon flooded with messages of support. Love Island’s Dani Dyer said: “Oh Jesy. You are doing amazing,” with two red heart emojis. Billie Shepherd added: “Sending you all so much [heart emojis]. Super mumma. You are amazing.”
Chelsee Healey added: “You are amazing! Precious, beautiful baby girls.” Shaughna Phillips branded her a “warrior mama”.
One fan told her: “Its crazy to think that all of this could of been prevented. These two angels wouldn’t need to suffer. May God continue to give you all strength and to heal the twins.”
A second said: “I am sending you so much love. The fact this could have been prevented if they had testing in place and they’re trying to argue against having it in place to help every other baby going forward is heartbreaking.”
Just days ago, Jesy celebrated a major milestone as one of her daughters sat up in her wheelchair. Posting to her Instagram, she revealed that one of her twins has sat up straight in her wheelchair. Sharing a snap on the social media platform, Jesy said: “She looks like such a big girl with no tube on her face and sitting upright in her chair.”
According to the NHS, Type 1 SMA means sufferers are unable to sit without support and have difficulties with feeding and breathing. Since their diagnosis, the former Little Mix singer has been campaigning for newborn testing to be rolled out across the NHS. Last month, Jesy revealed she was “heartbroken and outraged” as she vowed to “keep on fighting” for the testing.
She had attended parliament for the MPs’ debate on SMA screening from birth. But the decision incensed Jesy after it didn’t go completely to plan. Currently, only 72 per cent of the country will have access to newborn screening when it is introduced in October.
Jesy revealed she felt let down by the decision. Holding back the tears after the meeting, 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?”
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