Little Mix singer Jesy Nelson has revealed the most frustrating part of her daughters' "life-changing" diagnosis live on ITV's This Morning on Wednesday.
Speaking to hosts Ben Shephard and Cat Deeley, Jesy explained the emotional impact of the diagnosis on her and her fiance Zion Foster's two daughters, Ocean Jade and Story Monroe, who were born prematurely in June 2025 and have since been diagnosed with Spinal Muscular Atrophy (SMA) type one.
© InstagramWhen host Cat said she had no awareness of the condition, Jesy replied: "Neither did I, but as soon as you start to delve into the research, you realise that actually, something can be done. That is the part that frustrates me the most, and that is why I wanted to make this video. Because the thing that's just mad to me is I actually knew and saw all of the signs before I even knew what SMA was."
Jesy explained that because her babies were born prematurely, she was told not to compare them to other children. "It was hammered home to me, don't compare your baby. Do not compare your baby. They're not going to reach the same milestones. Take them as they are because they were premature," she said.
Continuing, Jesy said: "And that's what's frustrating – knowing that for me, if this was the cards I was always going to get dealt and there was nothing I could do about it, then it's almost easier for me to accept, but when you know that there is something that can be done about it, and it is life changing to your child, that's the part that I cannot accept, and that is why I'm going to shout to the rooftops about this."
Jesy's initial announcement
The 34-year-old first announced the news of her daughters' diagnoses on Instagram on Sunday.
"If it's not treated in time, your baby's life expectancy will not make it past the age of two," she said, before explaining that the assessment at Great Ormond Street Hospital for Children found the girls "will probably never be able to walk".
"They probably will never regain their neck strength, so they will be disabled," a tearful Jesy said.
The singer added that "the best thing we can do right now is get them treatment and just hope for the best", and thanked those who gave her girls their treatment.
"I am so grateful because without it, they will die," she said.
In another Instagram post, Jesy announced her intention to campaign for universal SMA screening at birth, when newborns receive a blood spot screening test.
Jesy told her 9.7 million followers: "I just want to let you guys know I am starting a petition to try and get SMA on the newborn screening heel prick test from birth. I just want you to know that I am so determined to make this happen. I'm going to fight as much as I can to make this part of the newborn screening."
She continued: "It's currently under review, so I will keep you updated with that one, guys."
