JESY Nelson has shared the moment she discovered her twin daughters have the muscle-wasting condition SMA — and said it will leave her “heartbroken for the rest of my life”.
Brave Jesy, 35, allowed cameras into her life for the new Amazon Prime documentary, Life Changing, as she became a mum for the first time.
What she didn’t know at the time was that her eight-week-old girls — Ocean and Story — had a rare condition (Spinal Muscular Atrophy Type 1) that could prevent them from ever being able to walk.
In the raw clip, Jesy is seen standing as a doctor delivers the life-changing diagnosis, telling her: “The genetic testing came back positive for Spinal Muscular Atrophy.”
It prompts devastated Jesy to break down in tears as she contemplates what this means for her young family.
She says: “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.”
She later adds: “I get bombarded with hospital appointments, my whole life has changed.”
Jesy, who split from the girls’ dad Zion Foster shortly after the diagnosis was made public, wrote a heartfelt caption alongside the trailer for the documentary on Instagram.
The mum-of-two, who is campaigning for earlier and better screening of the condition in newborns, posted: “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.”
Ocean and Story were infused with an SMN gene after diagnosis which stopped the disease progressing further, but it doesn’t reverse existing damage.
Earlier this year, Jesy launched a petition for more health checks for babies, reaching more than 150,000 signatures.
In a letter addressed to Jesy and Giles Lomax, the chief executive of the charity SMA UK, Health Secretary Wes Streeting confirmed that screenings will be rolled out earlier than planned.
They will now begin as part of in-screening evaluations (ISE) from October 2026 instead of January 2027.
It is believed that more than 400,000 newborns will benefit from the move.
But 163,000 newborns will remain untested so they can act as a control group to compare outcomes.
This has been branded by experts as “unethical” and means that an estimated 11 babies a year will still be diagnosed too late.
Jesy, who is a patron of SMA UK, celebrated the news in a post on Instagram, claiming it was a “major milestone”.
She said: “ISE have announced to start screening for SMA in England will now begin in October 2026.
“I am so proud, as this is a major milestone for the SMA Community.”
