Former Little Mix star Jesy Nelson has revealed the “hardest thing” about her daughters’ diagnosis ahead of a new Prime Video documentary.
Jesy Nelson: Life Changing follows the 35-year-old singer as she campaigns to alter UK newborn screening laws, a mission prompted by her twin daughters, Ocean Jade and Story Monroe, being diagnosed with spinal muscular atrophy (SMA).
Nelson disclosed her daughters’ rare genetic condition in January, stating they are unlikely to walk or gain neck strength.
Appearing on ITV’s This Morning, the singer discussed the profound difficulty of re-watching the documentary, which chronicles her daughters’ SMA1 diagnosis and her subsequent advocacy.
Nelson 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’.
“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.”
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.”
The singer explained how “horrendous” it is when changing her one-year-old daughters’ nasogastric tubes, which are used to feed them.
Nelson said: “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.”
The star also reflected on the impact her daughters have had on her life, and was asked whether she would want to change things.
Nelson 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 she has received 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.
According to the NHS, SMA causes progressive muscle wastage, weakness, movement problems, issues with breathing and swallowing, muscle tremors, and bone and joint problems.
Since the twins’ diagnosis, Nelson has been campaigning for the condition to be added to the newborn, blood spot, screening test as early treatment can help avoid some of its most devastating effects.
The Department of Health announced on Thursday 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.
Hundreds of thousands of babies will be screened as part of the simple, heel-prick, blood test shortly after birth.
