Pop
Former Little Mix star Jesy Nelson is taking a break from music to focus on caring for SMA1 diagnosed twins
Jesy Nelson has ruled out making new music to focus on being a mother to her twin daughters and to continue campaigning for SMA1 testing at birth.
Jesy Nelson is taking a break from music to focus on caring for her twin daughters who have been diagnosed with SMA1.
The former Little Mix singer is taking a break from her career to give all her love and attention to her eight-month-old twins Ocean and Story who have Spinal Muscular Atrophy Type 1, a severe form of the rare, progressive, non-reversible, muscle-weakening genetic condition.
As well as caring for the tots, Jesy will be campaigning for mandatory NHS newborn screening for SMA1 so the condition is detected as early as possible so treatment can administered as early as possible.
Jesy Nelson and Zion Foster / Credit: Getty
Speaking to Amanda Holden and Jamie Theakston on Heart FM's Breakfast show, Jesy - who recently split from her daughters' father, Zion Foster - said: "Look listen I’d never say never say never to music, 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.
"Because that’s going to determine their future. That’s my main focus right now."
Jesy, 34, first went public with her daughters' diagnosis in an emotional video posted to her 9 million Instagram followers.
Later in January, Jesy was a guest on UK TV show This Morning to discuss how she was coping in the aftermath of the news from the doctors and speak about the realities of caring for Ocean and Story.
She said: "My house looks like a hospital. My hallway is filled with medical stuff. It’s crazy how you can go from one extreme to the next.
"Story is on a breathing machine at night because she’s not strong enough to breathe by herself, they have feeding tubes down their nose, and I’ve literally had to learn all this in the space of a few days since getting their diagnosis. It’s so much to deal with.
“I’m still struggling with it, I’m not going to lie… I just want to be their mum, I don’t want to be a nurse. It’s hard. I just want to reiterate that if this is caught from birth it’s just life changing. I don’t think I’ll ever get over it or accept it, but all I can do is try and do my best and try and make change.”
Although the babies have undergone gene therapy, Jesy explained the condition isn't reversable and the tots will "probably" never walk or regain the strength in their necks, but she is trying to stay positive.
She said: "They’ve had treatment now thank God, that is a one off infusion.
"And that essentially puts the gene back in their body that they don’t have. It stops any of the muscles that are still working from dying. But any that have gone you can’t regain those back.
"So now it’ll be a case of constant physio… we’ve been told they will probably never walk, probably never regain their neck strength, they are going to be in wheelchairs ... but listen, there have been so many stories where parents have been told this and their children have gone on to do incredible things, so I believe you’ve just got to manifest this.
"They are still smiling, they are still happy and they have each other and that’s the thing I’m so grateful for. They are going through this together and I think this is beautiful.
"All I can do is try my best to be there for them, give them positive energy, and keep doing physio… my whole life has completely changed."
Little Mix at the 2019 BRIT Awards / Credit: FAMOUS
