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Jesy Nelson’s twins’ diagnosis explained, what SMA is and the early signs parents should know

Jesy Nelson’s twins’ diagnosis explained, what SMA is and the early signs parents should know

After Jesy Nelson shared her twins’ SMA diagnosis, we explain what the condition means and the signs parents are urged to look out for.

Instagram @jesynelson

Ruairidh Pritchard

Published: January 5, 2026 at 11:04 AM

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Jesy Nelson has shared a devastating update about her twin daughters, Ocean Jade and Story Monroe, revealing they have been diagnosed with a rare genetic condition called spinal muscular atrophy, or SMA.

Speaking in an emotional video shared with fans, the former Little Mix star explained that doctors have told her the girls will never walk, and that without urgent treatment, the condition can be life-limiting.

Her honesty has prompted many parents to ask what SMA actually is, how it shows up in babies, and what signs families should trust their instincts on.

Below, we break down the condition, using Jesy’s experience as a guide to what parents need to know.

Jesy Nelson’s twins and their diagnosis

Jesy, 34, endured a complicated pregnancy after her identical twins were diagnosed with twin-to-twin transfusion syndrome, a condition that affects around 10 to 15 percent of identical twins who share a placenta, according to the NHS.

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After undergoing emergency surgery and spending weeks in hospital, Jesy gave birth prematurely at 31 weeks last May. Like many parents of premature babies, she was reassured not to compare milestones too closely.

It was only months later, after repeated appointments, that Ocean and Story were diagnosed with SMA type one, the most severe form of the condition.

Sharing the news, Jesy said: “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.”

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What is spinal muscular atrophy (SMA)?

Spinal muscular atrophy is a rare genetic condition that affects the nerves in the spinal cord that control muscle movement. Over time, these nerves stop working properly, causing muscles to weaken and waste away.

In babies with SMA type one, symptoms usually appear within the first six months of life. The condition affects muscles used for movement, breathing and swallowing.

Jesy explained the seriousness of the diagnosis, saying: “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.”

There is currently no cure for SMA, but early treatment can significantly improve outcomes and quality of life.

The early signs Jesy noticed in her twins

One of the most striking parts of Jesy’s story is how subtle the early signs were.

She explained that her mum was the first to notice something might not be right. “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be,” she said.

At first, Jesy was reassured that this was normal for premature babies. “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.’”

Later, feeding difficulties became another concern. “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.”

Common symptoms of SMA in babies

While every child is different, doctors say symptoms of SMA in infants can include:

Reduced movement in the arms or legs
Floppiness or low muscle tone
Difficulty lifting or controlling the head
Problems feeding or swallowing
Shallow breathing or frequent chest infections

Jesy revealed that once her daughters were assessed at Great Ormond Street Hospital, the prognosis became clear. “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.”

Treatment and why timing matters

Jesy stressed how crucial early treatment is. “Once the girls got treated it was a very rapid process. Time is of the essence with this disease,” she said.

She added: “Thankfully the girls have had their treatment which I’m so grateful for. If they didn’t have it they would die.”

Treatments for SMA aim to slow the progression of the disease and preserve muscle function, but they work best when started as early as possible.

A message for parents

Jesy described the emotional toll of the diagnosis, saying: “I am grieving a life I thought I was going to have with my children.”

She also shared how quickly her life has changed. “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.”

For parents reading her story, Jesy’s experience underlines the importance of trusting your instincts, even when reassurance is given. If something does not feel right, asking for further checks or specialist referrals can make a critical difference.

As Jesy put it through tears, “At the end of the day they are still here and that's the main thing.”

For parents who may be worried after reading Jesy’s story, support and reliable information are available. The NHS has a detailed guide on spinal muscular atrophy, including symptoms, diagnosis and treatment options.

If you have any concerns about your baby’s movement, feeding or development, it’s important to speak to your GP or health visitor as soon as possible. As Jesy’s experience shows, early assessment and referral can be crucial, and parents should always feel empowered to push for answers if something does not feel right.

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Authors

Ruairidh PritchardDigital Growth Lead

Ruairidh is the Digital Lead on MadeForMums. He works with a team of fantastically talented content creators and subject-matter experts on MadeForMums.