Jesy Nelson shares heartbreaking moment her twins were diagnosed with SMA in new documentary trailer
Her new documentary Life Changing is out later in July
Last updated 7 hours ago
Former Little Mix singer Jesy Nelson has shared the heartbreaking moment her twin babies Ocean Jade and Story Monroe were diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic neuromuscular condition.
In a trailer for her upcoming Prime Video documentary Jesy Nelson: Life Changing, the mum-of-two is on a FaceTime call with a doctor, who tells her the genetic testing came back positive for SMA.
Sharing the emotional trailer with her followers, Jesy wrote: '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🤍'. (sic)
Watch the trailer below:
What is the documentary called?
Jesy's new documentary is called Jesy Nelson: Life Changing, not to be confused with Jesy Nelson: Life After Little Mix, which arrived earlier this year.
When does it come out?
Jesy Nelson: Life Changing will arrive on Friday 17th July 2026.
How can I watch it?
The documentary will be available to stream on Prime Video.
READ MORE: Jesy Nelson 'in talks' to join cast of TOWIE
Since discovering the diagnoses, Jesy has become a patron of SMA UK and has been campaigning endlessly to have Spinal Muscular Atrophy (SMA) added to the NHS newborn blood spot screening in England.
After starting a petition and meeting with Health Secretary Wes Streeting on This Morning, Jesy delivered some good news at the start of April, revealing ISE (In-Service Evaluation) announced screening would start for SMA in England in October 2026.
However, just a few weeks ago, Jesy revealed she felt 'let down' and 'disgusted' at the decision to only partially roll out the screening programme in England.
She wrote on Instagram: 'The outcome wasn’t what we hoped for. I feel deeply let down and disgusted that we are still choosing to let future Sma babies suffer with this awful disease, when this doesn’t need to be the case! But I will keep on fighting until one day no future Sma baby will miss the opportunity to get screened from birth and given life changing treatment just because of where they live 😔'. (sic)
Going into more detail in a video to her fans, the 35-year-old added: 'Yesterday, MPs debated my petition after more than 150,000 people signed in support of newborn screening for SMA.
'Thank you to everyone who signed, shared and supported this campaign. Every single action helped bring this issue into Parliament and gave families affected by SMA a voice.
'We’ve already achieved incredible progress: newborn screening for SMA is due to begin in October, giving babies the chance of earlier diagnosis, earlier treatment and a healthier future.
'However, only 72% of babies in England will initially be covered. That means a baby’s access to life-changing treatment could still depend on where they’re born, and that simply isn’t fair.
'Every baby deserves the same chance, regardless of their postcode.
'I’m now calling on James Murray MP, Secretary of State for Health and Social Care, and Sharon Hodgson MP, Parliamentary Under-Secretary of State for Public Health and Prevention, to provide a clear timeline for when newborn SMA screening will reach 100% coverage across England and I’d welcome the opportunity to meet with ministers alongside SMA families to discuss the rollout and concerns raised during the debate.
'Early diagnosis saves lives, prevents irreversible damage and gives children the best possible start. No parent should ever wonder if their child missed that chance simply because of where they were born.
'Every baby deserves the same chance. Every life matters❤️'. (sic)
What is SMA?
According to the NHS, Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms.
You can find out more about SMA here.
Jesy Nelson: Life Changing will arrive on Prime Video on Friday 17th July.