Jesy Nelson has shared the heartbreaking news that her eight month old twin girls have been diagnosed with rare genetic condition Spinal Muscular Atrophy, and may never walk
Doctors have told Jesy Nelson that her twin babies will probably “never be able to walk”.
Jesy Nelson has revealed the devastating news that her eight-month-old twin daughters have been diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA), which means they may never be able to walk.
The 34-year-old singer and her musician partner Zion Foster, 27, became parents to twins Ocean Jade and Story Monroe Nelson-Foster back in May.
In an emotional Instagram video posted today, the former Little Mix member could be seen struggling to hold back tears as she revealed: “I am grieving a life I thought I was going to have with my children.”
SMA affects every muscle throughout the body, causing symptoms such as weakness, breathing difficulties, problems with swallowing, and delayed development of motor skills, reports the Mirror.
Jesy gave birth to her twins Ocean Jade and Story Monroe prematurely at 31 weeks on May 15, 2025(Image: Instagram)
Jesy explained that she’s now taken on the role of a round-the-clock carer for her daughters and has been forced to perform ‘things no mother should.’
The vocalist initially sought medical advice after her mother observed that the twins weren’t displaying the expected level of movement for their age.
Despite being told that the babies might develop more slowly due to being born prematurely, Jesy admitted she tried not to “compare them” to other infants of similar age.
Following persistent efforts to get answers, Jesy’s twins received a diagnosis of SMA Type 1.
Breaking the news to her fans on Instagram, Jesy explained: “I wanted to come on here to share some news with you guys. I’m not actually sure where to start with this video.
Jesy Nelson shared the girls’ diagnosis in a heartbreaking Instagram video
“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,” said Jesy. “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. 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.”
Jesy continued: “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 Muscle Atrophy which affects every muscle in the body from legs, arms, 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.
Jesy Nelson and Zion Foster with their twin daughters(Image: ITV)
“Once the girls got treated it was a very rapid process, time is of the essence with this disease,” said Jesy.
“When they assessed the girls at Great Ormond Street, 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.”
At present, there is no cure for (SMA), though treatments and support are available to help individuals achieve the highest possible quality of life.
Describing how her world has been completely transformed over the past four months, Jesy revealed: “I am grieving a life I thought I was going to have with my children.”
“The hospital has become my second home. I feel like I’ve had to become a nurse within two weeks of getting the diagnosis. I’ve had to do stuff no mother should have to do to their child.
“I made this video because the last three months have been the most heartbreaking time of my life.”
Jesy Nelson’s twins Ocean Jade and Story Monroe Nelson-Foster
Becoming emotional and breaking down, Jesy continued: “I know I have to be grateful. At the end of the day they are still here and that’s the main thing. They’ve had their treatment. I truly believe that my girls will defy the all the orders and with the right help they will fight this.”
Following the upload of her courageous video, a number celebrities sent messages of support. Jesy’s former partner Chris Hughes posted: “A warrior Jess. Be easy on yourself. Sending prayers to you all, everyone is behind you guys.”
Love Island’s Shaughna Phillips reassured the new mum: “Sending you and your girls so much love and positive prayers, you are a superwoman and they are lucky to have you.”
TOWIE star Jess Wright expressed that she was “Sending you so much love and strength” with co-star Amy Childs chiming in: “I’m so sorry Jesy what your going through x sending love and strength to you and your beautiful girls xxx”.
Jesy faced a challenging pregnancy that required her to have surgery after her daughters were diagnosed with twin-to-twin transfusion syndrome (TTTS).
Jesy and Zion have been open about the struggles they faced while the singer was pregnant (Image: INSTAGRAM)
TTTS impacts 10 to 15% of identical twins sharing a placenta and “can have serious consequences”.
The disorder stems from unusual connecting blood vessels within the placenta, creating an uneven blood flow between twins, resulting in one receiving more blood volume than the other.
The pop star had the urgent operation and remained hospitalised for 10 weeks before delivering the twins early at 31 weeks on May 15.
Throughout her pregnancy journey, Jesy also disclosed that her twins were monochorionic diamniotic (MCDA), indicating they shared one placenta whilst having individual amniotic sacs.
Jesy’s announcement follows her revelation about recording a six-part documentary chronicling her pregnancy and what she called a “new chapter in her life”.
Jesy and Zion captured the emotional rollercoaster of their challenging nine-month journey for an Amazon Prime series.
Jesy shared pictures of her girls in June saying “I have never ever felt more lucky and blessed in my whole entire life”
Taking to her Instagram to break the news, Jesy revealed: “I feel so excited and proud that we can finally reveal we have been filming our own series for Amazon! Letting the cameras in wasn’t an easy decision for us as it’s such a deeply personal time but I knew I wanted to tell my story in my own words. We opened the doors fully and I’m really looking forward to letting you all in as I navigate my way to becoming a first time mum to our beautiful baby girls Ocean and Story.
“I’ll be honest, it’s not been easy as it’s been such a high risk pregnancy, so you’ll see all the highs and lows and rollercoaster of emotions we have been going through. I hope you will all join me on this journey as I really open up and say goodbye to the past and enter this new chapter in my life. I hope you love it as much as we do”.
Jesy said her girls were fighters and she knew they’d do what they could to fight the odds
In a candid chat with the Mirror before the twins arrived, Zion revealed how the challenging pregnancy had strengthened their bond.
He shared: “We’ve literally grown to understand each other on a deeper level. And I think we really understand how much we actually care about each other.
“I think it’s at these times when you really, really know what love you have and what your relationship means.
“And I think for me and Jess, this has just taken it to a whole other level of us knowing we are literally made for each other.”
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