Jesy Nelson has shared a heartbreaking update on her twin daughters, Ocean Jade and Story Monroe, who live with spinal muscular atrophy (SMA) and must wear spinal suits despite the blistering heatwave. The singer said her heart has been 'broken into a million pieces' as the UK endures its third heatwave in weeks.
Struggle in the Heat
Writing over a video on Instagram, Nelson 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.' She explained that the suits are necessary to prevent further deterioration of their spines and feet, though they cannot correct the condition.
Nelson added: '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, born at 31 weeks and five days, were diagnosed with SMA in January 2026, making it unlikely they will walk.
Support from Fans and Celebrities
The video, viewed by her 9.5 million Instagram followers, received thousands of likes and messages of support. Love Island's Dani Dyer commented: 'Oh Jesy. You are doing amazing,' with red heart emojis. Billie Shepherd wrote: 'Sending you all so much [heart emojis]. Super mumma. You are amazing.' Chelsee Healey added: 'You are amazing! Precious, beautiful baby girls.' Shaughna Phillips called her a 'warrior mama'.
One fan noted: '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.' Another 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.'
Milestone and Campaigning
Days earlier, Nelson celebrated a milestone as one of her twins sat up in her wheelchair. She posted: '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 cannot sit without support and have feeding and breathing difficulties.
Nelson has been campaigning for newborn SMA testing across the NHS. Last month, she attended a parliamentary debate on SMA screening, but felt let down when only 72% of the country will have access to newborn screening from October. Holding back tears, she 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?'
