Jesy Nelson has shared another deeply emotional glimpse into life with her twin daughters, revealing that one simple childhood moment has become her biggest dream as the family continues to navigate their battle with Spinal Muscular Atrophy (SMA) Type 1.
The former Little Mix star, 35, announced in January that her 14-month-old daughters, Ocean and Story, had been diagnosed with the rare genetic condition, which attacks the motor neurons in the spinal cord and can severely affect movement and muscle strength.
Since receiving the devastating diagnosis, Jesy has become one of the UK’s most outspoken campaigners for newborn SMA screening, regularly documenting her family’s journey while urging the government to improve early access to life-saving treatment.
On Sunday, Jesy posted a touching video showing herself sitting on a playground swing with one of her daughters safely on her lap. While the clip captured a tender mother-and-daughter moment, the caption revealed the heartbreaking reality behind it.
“My dream is to one day push my girls on a swing all by themselves but for now we’ll enjoy it just like this,” she wrote.
The emotional post quickly resonated with fans, many of whom praised Jesy’s strength and unwavering determination as she continues to cherish every milestone with Ocean and Story.
Alongside the touching swing video, Jesy also shared another sweet clip of one of her daughters happily babbling away. Smiling at the adorable moment, she captioned the video: “I think she might be a singer.”
The latest update comes just weeks after Jesy admitted she was left “heartbroken and outraged” following a parliamentary debate over newborn SMA screening across England.
Jesy attended Parliament after launching a petition that attracted more than 150,000 signatures, calling for every newborn in England to be screened for the condition.
However, the outcome left her devastated after ministers confirmed that only around 72 per cent of England will initially receive newborn SMA screening when the programme begins in October, while the remaining 28 per cent will not.
Leaving Parliament visibly emotional, Jesy struggled to hide her frustration.
“I’m going to be completely honest, I was absolutely fuming. I feel so let down,” she said.
“I have no more words. It’s sad. It’s so sad, like our children’s lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not.”
“Based on where you live, how does that make sense? How is that fair? How is that fair?”
The phased rollout follows recommendations from the UK National Screening Committee, which plans to evaluate both the effectiveness of screening and the financial impact on the NHS before expanding the programme nationwide.
Several major cities, including Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth, will not be included in the first phase because six NHS testing laboratories currently lack the required equipment.
Following the debate, Jesy addressed her Instagram followers directly, challenging Health Minister Sharon Hodgson over the government’s decision.
“There is factual evidence that this treatment, if given from birth, is completely life changing to a child that is diagnosed with SMA,” she said.
“If it isn’t, and they get left untreated, there are facts that if your child doesn’t get treatment, they will not see their second birthday. They will die before the age of two.”
“And there were families in that room yesterday that had children that have died from this horrendous disease.”
Jesy then questioned why access should depend on where a child is born.
“So my question to Sharon is, if it’s safe enough for 72 per cent of England to get this tested at birth, then why is it not good enough for the 28 per cent of England to not get tested at birth? How does that make any sense?”
She also criticised comments made during the debate after Sharon reportedly said officials needed to ensure the programme would “do more good than harm.”
“Please tell me how that statement makes any sense,” Jesy responded.
The singer later revealed that she personally showed the minister a video of sisters Maisie and Amelia, who both have SMA but received treatment at different stages.
According to Jesy, one sister, who received treatment from birth, is able to run and play, while the other relies on a wheelchair despite sharing the same diagnosis.
“When I showed her this video, her exact words were, ‘Wow, is that what the treatment does? Wow.’ She was gobsmacked,” Jesy recalled.
As she continues to balance motherhood with campaigning, Jesy’s message remains clear: every child diagnosed with SMA deserves the earliest possible chance at treatment—and, one day, the simple joy of swinging through the playground independently.
