Jesy Nelson: Life Changing documentary reveals fight with babies' spinal muscular atrophy

Prime Video's documentary 'Jesy Nelson: Life Changing' opens with scenes of Jesy Nelson moving to Cornwall with her fiancé Zion Foster and their premature twins, Ocean and Story. Seven months later, while filming continued, the twins were diagnosed with spinal muscular atrophy (SMA), a life-threatening muscle-wasting condition.

Nelson's mother, Janice White, was the first to notice the girls were not kicking their legs. A consultant delivered the diagnosis via a video call. 'I feel like I'm going to be heartbroken for the rest of my life,' Nelson told the camera afterwards.

Had the twins been diagnosed at birth, gene therapy could have prevented muscle wasting. But without early diagnosis, lost muscle cannot be restored. The twins are likely to need equipment to move, eat, sit up, and possibly breathe. Left undiagnosed, they would probably have died by age two.

The bulk of the documentary focuses on Nelson's campaign to include SMA screening in standard newborn heel-prick tests. She became a patron of the charity SMA UK and grilled then-UK health secretary Wes Streeting on breakfast television.

The film also shows quiet moments at home with Nelson's mother, now providing full-time care after Nelson and Foster split up. One heartbreaking scene shows Nelson asking the producer: 'One day, are [the twins] going to be mad at me because I didn't see the signs earlier?'

Towards the end, Nelson tours a lab in Scotland to mark the Scottish government testing newborns for SMA. The day before the documentary aired, the UK government announced that every baby in England would be screened for SMA from October. However, Wales and Northern Ireland are still not covered.

The film finishes with a clip from Nelson's phone showing baby Story saying 'Mumma' for the first time.