A spare bedroom in new mum Jesy Nelson’s house tells a heartbreaking story. It is half-full of the medical equipment needed to feed her twin daughters, with the other half taken up by toys they cannot play with.
The former Little Mix star gave birth last year to Ocean Jade and Story Monroe Nelson-Foster. They were later diagnosed with Spinal Muscular Atrophy (SMA), a rare condition that causes muscle wastage.
In a new documentary, Jesy’s mum Janice shows cameras the spare room and explains: “This is actually quite organised but it is all their stuff they can’t use and all their medical stuff, their feeding tubes and stuff, but it upsets Jesy if she sees it downstairs, so we keep it up here.”
She then brings out a brand-new cuddly elephant rocking chair and adds: “It is all things we bought like toys, and nothing was suitable because everything has to be specialised because of their spines. I said, ‘you should donate them to the hospital and things, they need it’. Hopefully, someone else will get the benefit of them.”
Jesy Nelson: Life Changing focuses on her bid to get SMA testing at birth throughout the UK. The 34-year-old singer joined forces with the Mirror for the campaign, calling for people to sign a petition, which then gained enough signatures to be debated in Parliament. A vote will take place later this month.
In the new film, Jesy is shown going to Scotland on March 23 this year, when health authorities began testing for SMA at birth. Jesy hugs one of the medical workers carrying out the testing and is delighted by the news, but she also admits the moment is bittersweet as this simple test would have got Ocean and Story diagnosed at birth and treated immediately, instead of months later when more damage had been done.
She tells the medic: “These babies are going to have a different life to our children, it is amazing what you are doing.” Jesy then walks out of the clinic as tears roll down her face and says: “I feel, like, stupid getting upset but part of me just feels angry. I know this is amazing but it is sh** at the same time. I feel so much resentment as well. It is just frustrating.”
Jesy’s twins are shown using special chairs and receiving treatment so that they might one day be able to walk. But at the moment they are still at times unable to be bottle-fed, and so Jesy has to use a tube for mealtimes.
Reflecting at the end of the documentary, Jesy says: “In the beginning I felt like I was going to feel that sadness and that heartache for the rest of my life. But the pain does get less. When something like this happens in your life, it puts everything into perspective, there’s a reason that this is, you know, happening.
“There is this whole community that have been fighting for years to be seen and heard, so that no other family has to go through this ever again. That’s the reason. The girls’ diagnosis has become my normal now. They are the reason that I now feel that I have purpose, and they give me strength every day.
“They give me a reason to not be sad. Because I am, like, how can I be sad when you’re going through all of this and they’re still smiling?”
The film ends on a happy note as the twins celebrate their first birthday and Story says “Mama” for the first time. The twins were born in May 2025 and Jesy and partner Zion stayed together for the first six months, but have now split up.
Jesy said: “We still get on. There’s no bad feeling. My main priority is them, so, like, I just want to be the best mum for them. I want to have the best energy, and I want to be positive. We were both dealing with this situation completely differently, so I decided we would be better off apart.”
Jesy Nelson: Life Changing will be shown on Prime from July 17.
