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Jesy Nelson's heartbreak over twins' spinal jackets
11 Jul
Summary
- Jesy Nelson's twin daughters diagnosed with spinal muscular atrophy.
- Children wear spinal jackets and splints during heatwave.
- Nelson advocates for early SMA screening in newborns.
Former Little Mix star Jesy Nelson has expressed deep sadness over her twin daughters' need to wear spinal jackets and splints amidst the UK heatwave. Nelson's daughters, Ocean Jade and Story Monroe Nelson, were diagnosed with spinal muscular atrophy (SMA), a genetic condition causing progressive muscle wasting.
The singer revealed that while the orthotic devices will not correct the existing spinal or foot deterioration, they are essential to prevent further worsening. The NHS describes SMA as a condition leading to muscle weakness, breathing difficulties, and bone problems.
Nelson shared in January that her twins are unlikely to walk or regain neck strength due to the condition. Although they received a gene therapy infusion to halt muscle death, it cannot restore already lost muscle tissue.
Following her daughters' diagnosis, Nelson initiated a petition for SMA screening to be included in newborn blood spot tests. The petition surpassed 100,000 signatures, triggering a debate in the House of Commons. She has also become a patron of Spinal Muscular Atrophy UK and met with the Health Secretary to discuss early detection's impact.
