Jesy Nelson’s Twins Endure Heatwave in SMA Jackets

By the Editorial Team · Sunday, July 12, 2026

Jesy Nelson revealed that her twin daughters, diagnosed with spinal muscular atrophy, are struggling with treatment during a heatwave while wearing spinal jackets and splints that help manage their condition. She is urging for mandatory newborn SMA testing across the UK, highlighting that early diagnosis and treatment can significantly improve outcomes and prevent severe physical deterioration.

Jesy Nelson’s twin daughters are enduring uncomfortable conditions amid a heatwave as they wear specialized spinal jackets and splints necessary to manage their spinal muscular atrophy (SMA). The former Little Mix singer shared a photo of one-year-old Ocean and Story to bring attention to the physical challenges the twins face due to their illness.

Diagnosed in January, Ocean and Story have SMA, a genetic disorder that affects nerve cells controlling voluntary muscle movement. The condition severely limits their motor abilities, making it unlikely they will ever walk or sit unaided, and also causes difficulties with breathing and feeding. The spinal jackets and splints are used daily to prevent further deterioration of their spines and feet, though Jesy Nelson emphasized that the devices do not correct their condition but only slow progression.

Nelson has been vocal in advocating for mandatory SMA testing for all newborns in the United Kingdom. She expressed deep emotional distress over having to dress her infants in restrictive braces during the current heatwave, stating that if the jackets are not worn, the twins’ physical condition would worsen. Nelson argues that early diagnosis through newborn screening, coupled with prompt treatment, can significantly improve outcomes for children born with SMA.

Currently, SMA testing has been implemented in Scotland since March, but its wider rollout across England is scheduled for October. However, Nelson criticized the limited reach of the program, pointing out that only about 72% of parents in England will have access to the test initially. She is calling for the addition of an SMA screen to the existing NHS newborn heel prick test for a cost of £5, aiming to ensure that all babies can receive early detection and treatment to prevent irreversible nerve damage during the crucial first weeks of life.

Despite the challenges, Nelson shared a positive moment recently when one of her daughters was able to sit upright in her wheelchair without needing a feeding tube, describing her as looking “like such a big girl.” The family’s experience underscores the urgency Nelson feels about improving SMA screening and care to reduce suffering for future children diagnosed with the condition.

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