Former Little Mix star Jesy Nelson has revealed she “couldn’t stop crying” after watching her new Prime Video documentary, which chronicles her campaign to change UK newborn screening laws for spinal muscular atrophy (SMA). The 35-year-old singer’s twins, Ocean Jade and Story Monroe, were diagnosed with SMA type 1 in January, a rare genetic condition that causes progressive muscle weakness and is unlikely to allow them to walk or gain neck strength.
Emotional Impact of the Documentary
Appearing on ITV’s This Morning, Nelson opened up about the difficulty of watching the documentary, titled Jesy Nelson: Life Changing. She said: “I’ve only watched it once, and I can’t watch it again. Me and my mum watched it the first time, and after we watched it… we just couldn’t stop crying. It was crazy because I know that that’s my life, but when it’s crammed into an hour… when you’re watching it from like an outside perspective, ‘oh, I can’t believe that’s my life’.”
She added: “It’s overwhelming because when you’re living it every day, you’re in autopilot mode. But then when you see it, you’re like, ‘oh my God’. So, I’ve only watched it once and I don’t know if I should again, because it mentally takes me back.”
Challenges of Caring for Twins with SMA
When asked by host Dermot O’Leary what the “hardest thing” about her daughters’ diagnosis is, Nelson said: “You’ll never get used to it. I’m not even going to lie about that. And they don’t know no different, which I think is super sad as well.” She described the “horrendous” experience of changing her one-year-old daughters’ nasogastric tubes, used for feeding. “They can’t breathe when they’re doing it, and to have to watch your child go through that… You can’t help them, and when they’re looking at me I feel like I’m allowing someone to do something bad to them.”
Campaign for Newborn Screening
Since the diagnosis, Nelson has been campaigning for SMA to be added to the newborn blood spot screening test, as early treatment can help avoid some of its most devastating effects. According to the NHS, SMA causes progressive muscle wastage, weakness, movement problems, issues with breathing and swallowing, muscle tremors, and bone and joint problems. On Thursday, the Department of Health announced that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year, screening hundreds of thousands of babies via the heel-prick blood test shortly after birth.
Motherhood and Support
Despite the challenges, Nelson reflected on the positive impact of her daughters. She said: “I’m not going to lie, of course I’d have (my daughters) without this disease. Why wouldn’t I? But in terms of having them and being a mum? Best thing that ever happened to me. I feel like this is what I was meant to do, this is my calling. They’re just like my whole world. I wouldn’t have it any other way.” She added that she has “amazing friends and family who are my support network” and that the help from the SMA community has been “a relief”. “When someone completely gets it… it’s like a weight lifted off my shoulders a little bit,” she said.
