Jesy Nelson revealed on Sunday that her twin daughters, who were born prematurely in May, have a rare condition called Spinal Muscular Atrophy that slowly kills the muscle over time
Jesy Nelson has issued an update on how she’s ‘fighting’ for her twin girls after their devastating health diagnosis. The former Little Mix star revealed on 4 January that her daughters, who had been born prematurely in May 2025, were diagnosed with Spinal Muscular Atrophy (SMA) – a rare health condition that slowly kills the muscles and may mean her daughters never learn to walk.
The singer took to Instagram to thank fans for their support. Speaking to the camera, she said: “Hey guys, I just wanted to come on here to do another video to basically just say thank you genuinely so so much from the bottom of my heart for just the outpour of support, and beautiful messages for me and for so many other families who are dealing with this horrible diagnosis.
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“Genuinely, I’m overwhelmed with the amount of support. I want to thank anyone who has shared it, to everyone who wanted to learn about it, who watched it and sent me messages. Thank you from me and the SMA community.”
Jesy added that she was already taking steps to bring attention to conditions like SMA. “I also wanted to say that I am starting a petition online to get SMA on the newborn screening and testing. I just need you to know that I am so determined to make this happen. So I’m going to fight as much as I can. It’s currently under review so I will keep you updated.”
She continued to say she would also be on This Morning on 7 January to talk about what was going on and finished her statement by saying: “It’s a long way to go.”
Jesy and her musician fiance Zion Foster welcomed their daughters Ocean Jade and Story Monroe Nelson-Foster in May. Over the ensuing months, Jesy noticed that her daughters were not moving as much as they should have been for their age and struggled to feed. She took them to the GP and they were eventually diagnosed with SMA Type 1.
SMA causes floppiness in the limbs, difficulty breathing and swallowing as well as delayed motor skills. Sharing the news on Instagram, Jesy said she was now acting as a nurse to her daughters by “putting them on breathing machines and doing stuff that no mother should have to do with their child”.
She said: “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be. It wasn’t really a concern to me at the time. From the minute I left NICU I was told, ‘Your babies are premature so don’t compare your babies to other babies. They won’t reach the same milestones just take them as they are.’
“It didn’t really ring alarm bells to me,” she said. “They are my first set of children and I was told not to compare to them. Health care visitors insisted everything was fine and the girls were healthy.
“There were a few signs later on that the girls were struggling to feed properly. We would take them to the GP and say, ‘Our babies are not feeding as frequently as they should.’ They said it was fine and to try little and often,” she explained.
Jesy went on: “Long story short, after the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one. It stands for spinal muscular atrophy which affects every muscle in the body from legs, arms to swallowing.
“Over time it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two. Once the girls got treated it was a very rapid process, time is of the essence with this disease. We were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled.
“The best thing we can do right now is to get them treatment and hope for the best,” she added. “Thankfully the girls have had their treatment which I’m so grateful for. If they didn’t have it they would die.”
Source: Mirror
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