Jesy Nelson has revealed she has stepped back from her music career to focus on caring for her twin daughters and campaigning for newborn screening for a rare genetic condition.
The former Little Mix star said her priorities have shifted after her daughters, Ocean and Story, were diagnosed with spinal muscular atrophy (SMA) type 1, a life-limiting neuromuscular disorder that causes progressive muscle weakness.
Appearing on Heart FM’s Breakfast show with Amanda Holden and Jamie Theakston on Thursday, Nelson said her focus is now firmly on her children.
“Look, listen, I’d never say never say never to music,” she said. “But for me, my girls are my main focus, I’ll be honest with you, I’ve not got time, I really don’t.
“They are my whole heart and soul and my main focus, and I want to continue advocating for them and getting this heel prick test changed and getting them strong. That’s my main focus right now. Because that’s going to determine their future.”
Nelson has been campaigning for SMA screening to be added to the newborn blood spot test – often referred to as the heel prick test – to enable earlier diagnosis and treatment.
SMA type 1 is the most severe form of the condition. It affects the nerves that control muscle movement, leading to difficulties with swallowing, feeding and breathing. Babies with the condition often require intensive medical support.
The singer said her daughters are currently undergoing treatment and are particularly vulnerable to infection.
“They are so vulnerable where they’ve had their treatment, they are on a course of medication right now, so they can’t do a lot,” she explained. “We have to be very careful. We can’t take them to many places because they can’t catch anything.
“So once they’re off them hopefully we’ll be on the up. They’ll get even stronger. They’re doing really well.”
Nelson also opened up about the emotional toll of caring for children with complex medical needs.
“Every day is so full-on – I can speak about it, but I’ll never be able to explain how intense it is until you see it,” she said. “There are a lot of medical things I have to do which I am still really struggling with.
“They’re so tiny and I have to do things which I know are doing them good but at the time, when they’re crying and screaming, it feels like I’m hurting them. I just want to be their mum.”
She described life with the twins as a “rollercoaster”, adding that some days feel overwhelming while others are lighter.
Nelson’s daughters were born prematurely at 31 weeks after developing twin-to-twin transfusion syndrome (TTTS) during pregnancy.
It comes after Nelson recently confirmed she has split from Zion Foster, the father of her children. She said their relationship changed following the twins’ diagnosis but they are committed to co-parenting.
“It’s been really tough,” she said. “But we are getting on with it, and our girls are our main focus. They’re happy and doing well.”
Nelson previously said she would be open to a Little Mix reunion in the future, but for now her attention remains firmly at home.
