Jesy Nelson has given fans a glimpse into the moment she found out about her twin daughters’ SMA diagnosis in her new Amazon Prime documentary, Life Changing.
The 35 year-old dropped a trailer for the programme on Thursday, ahead of its release on July 17.
Jesy revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition.
Due to the late diagnosis, the girls are unlikely to be able to walk and require specialist equipment to help them breathe at night, as well as feeding tubes.
In the emotional clip, Jesy is cradling her eight-week-old daughters as a doctor tells her their results: ‘The genetic testing came back positive for Spinal Muscular Atrophy.’
Breaking down in tears, Jesy tells the camera: ‘I can’t believe this is happening. It’s the most severe muscle disease a baby can have.
‘I don’t know how we are going to do this. I feel like I’m going to feel heartbroken for the rest of my life.’
Elsewhere in the trailer, Jesy opens up about the many hospital appointments she has to attend: ‘I get bombarded with hospital appointments, my whole life has changed.’
Alongside the clip, Jesy heartbreakingly penned: ‘I’m really not sure where to start with this one… All I can say is that I urge everyone to watch this documentary.
‘It’s the most heartbreaking series I’ve ever had to make, but it’s one that needed to be made if we’re ever going to see real change.
‘This is only a small glimpse into what my girls have to go through every single day. It’s the reality that so many children born with SMA have to endure and this is only the beginning of their lives.
‘I truly hope this helps people understand why the heel prick test and treatment from birth are so incredibly vital. Early diagnosis can change EVERYTHING.
‘I’ll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this.
‘Please if you watch one thing, let it be this: “Jesy Nelson: Life Changing’ on @primevideouk, streaming from July 17th”.’
Last month, Jesy headed to parliament for a debate on whether a newborn screening for the disease would be rolled out across the whole of England.
2026-07-03 11:29:00
