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The fact that cameras were there to witness the worst moment of Jesy Nelson’s life was seemingly a coincidence. Prime Video had been following the former Little Mix singer for a documentary on her life since leaving the band, as well as the birth of her premature twins. What no one could predict was that, seven months later, as producers continued to film the growing family, Nelson’s daughters, Ocean and Story, would be diagnosed with the life-threatening muscle wasting condition spinal muscular atrophy (SMA).
Jesy Nelson: Life Changing starts with a clip from the last time viewers saw Nelson as she relocated to Cornwall with the father of her twins, her fiance Zion Foster, last year. “When they start walking, they can walk on the sand,” a smiling Nelson tells Foster as they sit with their babies on the beach. Of course, anyone who has seen the headlines in recent months knows this is achingly foreboding; a lost future that must be grieved and reshaped.
Within seconds, we’re off the beach and in a hospital room as the twins are tested for SMA. Nelson’s mother, Janice White, was the one who sounded the alarm, when she noticed the girls weren’t kicking their legs.
Back at home, with the family having returned to Essex, Nelson and Foster are waiting for a consultant to call with the test results. “Can you hear me?” he says over a video call, as life-changing news is delivered via an iPad screen. “I feel like I’m going to be heartbroken for the rest of my life,” Nelson says to the camera afterwards.
At times, it feels as if we are intruding on an experience few would choose to have in front of the world. But if you’re wondering why Nelson is putting herself through this, a line from the consultant sums it up: “We’ve already somehow wasted a lot of time [in treating the twins], as unfortunately SMA is still not part of the newborn screening in the UK.”
If Ocean and Story had been diagnosed at birth, gene therapy could have stopped their muscles from wasting. But without an early diagnosis, the twins are on catch-up: muscle that has not wasted already can be treated, but what has gone can’t be healed. This means the twins are likely to need equipment to move, eat, sit up and possibly breathe. If they had been left undiagnosed, they would probably have died by the age of two.
It is Nelson’s subsequent campaign to include SMA screening in standard newborn heel-prick blood tests that makes up the bulk of the documentary and gives it – and her – a driving purpose. We see Nelson become a patron of the charity SMA UK and give the then UK health secretary Wes Streeting a grilling on breakfast TV.
Every scene is affecting, but it’s the quiet moments at home with her mother – now providing full-time care alongside Nelson after Nelson and Foster break up – that feel the most authentic. There’s White struggling to find a saucepan – most have been thrown away, burned after meals are left on the stove when the twins call. And the specialist chairs Nelson has hidden behind the washing because she can’t yet bear to look at them.
In many ways, Nelson’s close bond with her mother is the heart of the documentary. You suspect it is whatkeeps her going. There is such clear love between them, coupled with gallows humour that will be familiar to anyone who has been through anything similar. In one scene, the two laugh at their friends’ concern that they will have “bad luck” because they’ve still got their Christmas tree up after Twelfth Night. “I don’t think a tree’s going to matter at this point,” Nelson deadpans.
Occasionally, the bravery briefly slips. “One day, are [the twins] going to be mad at me because I didn’t see the signs earlier?” Nelson asks the producer behind the camera before apologising for “the outburst”. You just want to reach through the screen and hug her.
As the twins celebrate their first birthday, we finish by following Nelson as she tours a lab in Scotland to mark the Scottish government testing newborns for SMA. The simplicity of it is brilliant and infuriating: a quick prick from a midwife, results in 66 minutes, and no child has to suffer.
The day before the programme aired, the UK government announced that every baby in England would be screened for SMA from October. But Wales and Northern Ireland are still not covered. As the credits fade out, viewers see a clip recorded on Nelson’s phone: a giggling Story says “Mumma” for the first time.
You can only hope that the politicians who have the power to act are watching.
