Jesy Nelson struggled to contain her emotions as she revealed the devastating new challenges facing her twin daughters amid their ongoing battle with spinal muscular atrophy Type 1.
The former Little Mix singer, 35, said the condition had created a “never-ending, life-changing situation” for her family and admitted she wished she could say their daily reality had become easier.
Jesy announced in January that her now 14-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare genetic condition that causes severe and progressive muscle weakness.
Speaking ahead of the release of her Prime Video documentary Jesy Nelson: Life Changing, she revealed that Story has now also been diagnosed with scoliosis, an abnormal curvature of the spine.
Both twins are also preparing to undergo surgery to change the way they receive food because their current feeding tubes are causing increasing trauma to their noses and throats.
“I wish I could say, ‘Oh, it’s easier now,’ but it’s not,” Jesy said.
“And that’s the really heartbreaking thing about this diagnosis. It’s not like, ‘They get their treatment and then it all goes away.’”
“It’s a never-ending, life-changing situation.”
Jesy explained that Ocean and Story currently receive nutrition through tubes that pass through their noses and down their throats.
However, as the girls grow older, they have begun repeatedly pulling the tubes out because of the discomfort they cause.
“They’re having an operation soon because obviously they’re on feeding tubes, and the girls basically keep pulling them out because they’re causing so much trauma to their nose and throat,” she said.
The new procedure will allow food to be delivered directly into their stomachs instead.
“They’ve now got to have an operation where the food goes into their tummy because they can’t have this tube down their throat anymore,” Jesy continued.
“It’s causing so much trauma.”
She then revealed the additional diagnosis affecting Story.
“Story has got scoliosis, and she’s going to have to eventually have an operation on her spine,” Jesy said.
“She’ll have to have that done every six months.”
As she described the scale of the medical care her daughters require, Jesy became visibly emotional.
“Sorry, I’m getting upset,” she said.
“There’s just so much that I don’t think people even know goes on.”
Jesy said this hidden reality was one of the main reasons she agreed to allow cameras into her family’s life.
She hopes the documentary will offer viewers a glimpse of what families caring for children with SMA experience every day.
“That’s why I wanted to make this documentary, because I feel like it only gives a small insight into what families have to go through on a daily basis,” she explained.
“That’s why I wanted to make change, so that no family has to ever go through this again.”
Although an SMA diagnosis would always remain heartbreaking, Jesy said testing at birth could allow treatment to begin before serious and irreversible damage occurs.
“They’ll get the diagnosis and that will still be heartbreaking,” she said.
“But to know that if they could get the treatment from birth, their life would be completely different — it is life-changing. It really is.”
Jesy also wants Ocean and Story to grow up understanding that their condition does not define them.
“I want my girls to know that this is their little superpower,” she said.
“I want them to grow up and know that this doesn’t define them, and know how brave and resilient they are.”
She added that her daughters had become “a massive part of change” through the awareness their story had created.
Despite allowing the most difficult moments of her life to be documented, Jesy admitted she finds the finished programme almost impossible to watch.
She has only viewed it in full once.
“I’ve only watched it once because it’s too hard for me to watch,” she said.
“This is my everyday life.”
Jesy explained that she operates on “autopilot” as she manages hospital visits, treatments and constant care, but seeing those moments compressed into a single documentary forced her to confront the scale of what the family has endured.
“When it’s crammed into an hour and you’ve got to watch it, you look back and think, ‘I can’t believe that’s my life,’” she said.
“I go to hospital appointments every week, but when you see how much you’re actually doing and what my babies are having to go through, it’s a lot to watch back.”
Jesy also spoke about the warning signs parents should be aware of, including unusual floppiness, difficulty supporting the head, reduced leg movement and breathing patterns involving the stomach.
She recalled that Ocean and Story initially moved their legs more frequently before their movement rapidly decreased.
“In the beginning of the documentary, you see that they would kick their legs,” she said.
“And then literally, rapidly, in about a month, they stopped moving.”
Jesy said a noticeable reduction in movement over time can be an important sign that medical advice is needed.
Since publicly sharing her daughters’ diagnosis, she has become one of the most visible campaigners calling for SMA screening to become standard for newborn babies.
Her campaign recently achieved a major breakthrough after it was confirmed that screening would be expanded across the UK.
Hundreds of thousands of babies are expected to be tested as the programme begins its rollout later this year.
Jesy said she was overwhelmed by the decision.
“It’s an emotional day. I’m still taking it in, to be honest,” she said.
“It’s amazing. It’s just mind-blowing. I feel so proud.”
She said the change meant the lives of babies diagnosed with SMA in the future could look completely different.
“And that is all I ever wanted,” Jesy said.
For Ocean and Story, however, the medical journey continues.
With further surgery ahead and Story now facing ongoing treatment for scoliosis, Jesy remains determined to turn her family’s pain into lasting change for others.
