Jesy Nelson breaks down as daughters with SMA struggle through UK heatwave
The singer revealed she spent the day in tears as her daughters were forced to wear medical support devices
Jesy Nelson has shared an emotional update on her twin daughters, revealing she was left in tears as they struggled through the UK's recent heatwave while undergoing treatment for spinal muscular atrophy (SMA) Type 1.
The former Little Mix star welcomed daughters Ocean and Story last year with her former fiancé, Zion Foster. The girls were later diagnosed with SMA Type 1, a rare inherited genetic condition that affects the motor neurons in the spinal cord and causes progressive muscle weakness.
Although there is currently no cure for the condition, treatment and supportive therapies can help slow its progression.
In a series of emotional Instagram Stories, Nelson admitted she had spent the day crying as she watched her daughters wear the medical devices needed to support their condition despite the soaring temperatures.
Sharing a video of the twins in their supportive chairs, she said:
“I've cried all day. Imagine having to wear a spinal jacket and splints in this heat. I cannot even begin to tell you how much this breaks my heart into a million pieces.”
Nelson explained that while the equipment is uncomfortable, it is essential to help prevent the girls' condition from worsening.
“But if I don't put them in these every day, their spines and feet will only deteriorate and get worse.”
She added that the braces cannot reverse the effects of the disease.
“These will never correct their spine or feet, it will only prevent it from getting any worse.”
The singer also renewed her campaign for earlier screening and treatment of SMA, arguing that newborn testing could spare other families from similar experiences.
“Once again, no future SMA babies need to suffer like this if they are given a heel prick test and treatment from birth.”
Nelson previously documented her family's journey in the Amazon Prime documentary Jesy Nelson: Life Changing, which captured the devastating moment doctors informed her of the twins' diagnosis.
Reacting to the news in the documentary, she said:
“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.”
Ahead of the documentary's release, Nelson urged followers to watch the series, saying it highlights the daily realities faced by families living with SMA.
She described the project as the most heartbreaking she has ever made and said she hopes it will help drive greater awareness of the importance of early diagnosis.
“Early diagnosis can change EVERYTHING,” she wrote. “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.”