Jesy Nelson's new documentary, Life Changing, has left viewers heartbroken and inspired as it chronicles her journey with spinal muscular atrophy (SMA) after the birth of her premature twin daughters. The condition, which affects one in every 6,000 births in the UK, can have devastating consequences if not detected early.
According to the NHS, SMA is a genetic disorder that causes progressive muscle weakness and wasting. It's caused by a faulty gene, which leads to the production of a toxic protein that destroys motor neurons in the spinal cord (NHS, 2022). The condition can be fatal if left undiagnosed, with one study showing that up to 95% of babies diagnosed at birth survive beyond the age of two (SMA UK, 2020).
For Jesy Nelson and her family, the diagnosis came seven months after the twins' birth. They were not part of the standard newborn screening programme in the UK, which tests for around 9 conditions including cystic fibrosis and sickle cell disease but currently excludes SMA (NHS, 2022). Gene therapy can be effective if administered early, but without it, babies with SMA will likely require extensive equipment to support their mobility, eating, sitting, and breathing.
Nelson's reaction to the diagnosis was not one of despair, but of determination. She is now a patron for SMA UK and has been working tirelessly with politicians to ensure that no other family faces the same diagnostic delay. In an interview with then-Health Secretary Wes Streeting, she highlighted the need for SMA inclusion in routine newborn screening (HuffPost, 2022). The documentary also shows Nelson's deep bond with her mother, Janice White, who has stepped in to provide full-time care.