‘They Told Me They Wouldn’t Live Past Two’: Jesy Nelson Speaks Through Tears as She Faces the Heartbreaking Reality of Her Twins’ SMA Diagnosis

Jesy Nelson has addressed the tragic prognosis that her twins Ocean and Story, nine months, won’t live beyond the age of two following their SMA type one diagnosis

Former Little Mix star Jesy Nelson has spoken with devastating honesty about the cruel prognosis facing her nine-month-old twin daughters — revealing that doctors warned Ocean Jade and Story Monroe may not live beyond the age of two following their diagnosis with Spinal Muscular Atrophy Type 1 (SMA1).

Speaking to Jamie Laing on his Great Company podcast, Jesy, who recently split from the children’s father Zion Foster, 26, said she is hopeful that her babies will defy the odds

The 34-year-old singer has chosen to speak out not for sympathy, but to raise awareness — and to fight for change — as she navigates the most painful chapter of her life as a mother.

Genetic neuromuscular disease SMA1 causes progressive muscle weakness and wasting due to motor neuron loss (pictured: Ocean and Story, nine months)

Jesy opened up during an emotional interview with Jamie Laing on his Great Company podcast, where she described the moment her world collapsed — and the fragile hope she is clinging to that her daughters might still defy the odds.

Jesy said: ‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body’

“They don’t have the gene we all have”

Jesy said: ‘Their muscles are now deteriorating and wasting away, and if you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two’

SMA Type 1 is a rare genetic neuromuscular condition that causes progressive muscle weakness and wasting due to the loss of motor neurons. Without early treatment, it affects breathing, swallowing and basic movement — and is often fatal in early childhood.

Explaining the condition in her own words, Jesy said:

“Spinal muscular atrophy is a muscular wasting disease. They don’t have a gene that we all have in our body.”

Former Little Mix singer Jesy has demanded the NHS expand the standard heel prick to check for spinal muscular atrophy. Tests cost around £1 each and doctors ‘could have saved their legs’ with early treatment

She revealed that without timely intervention, the disease steadily shuts the body down.

“Their muscles deteriorate and waste away. If you don’t get treatment in time, the muscles eventually just die — which affects breathing, swallowing… everything. And they will die before the age of two.”

Jesy never wanted children and ‘did not have one maternal bone in her body’, so she was surprised to discover she was pregnant with twins

Still, Jesy refuses to surrender to despair.

“It’s not okay — but it is what it is. I have to accept it and try to make the best of this situation. My girls are the strongest, most resilient babies. I really believe they are going to defy all the odds.”

A pregnancy already filled with fear

Jesy admitted she never planned to become a mother and was shocked to discover she was pregnant with twins two years into her relationship with Zion Foster, 26. But despite her fears, she said she felt genuine joy.

That joy was quickly overshadowed.

Jesy said of the situation: ‘It’s not okay, but it is what it is, and I just have to accept it and just try and make the best out of this situation. My girls are the strongest, most resilient babies, and I really believe that they are going to defy all the odds’ (pictured with their dad Zion)

During pregnancy, Ocean and Story developed Twin-to-Twin Transfusion Syndrome (TTTS) — a life-threatening condition affecting identical twins who share a placenta. Jesy was told she had a 95% chance of losing them without treatment.

She spent three months in hospital and gave birth prematurely at 31 weeks via emergency C-section. Jesy was put to sleep for the delivery.

“I feel like everything in my pregnancy was taken from me. All the things you’re supposed to enjoy — gone. I was so excited to see the birth of my children… and I didn’t get that either.”

When she woke, the babies were alive — but not with her.

Her first sight of her daughters was through a plastic incubator, surrounded by tubes and masks.

“I felt like they didn’t even know I was their mum”

The twins spent a month in hospital. Jesy was separated from them for the first week after being sent back to a local unit — an experience she described as one of the most traumatic of her life.

“Every time I came in, another woman was holding my baby. Feeding them. Looking after them. I felt like they didn’t even know I was their mum.”

She recalled breaking down when she saw a nurse bottle-feeding her babies for the first time.

“That’s my job. I just wanted to die. I can’t even explain how painful that was.”

So afraid of losing her bond with them, Jesy initially didn’t want even her own mother or sister to hold the babies.

The signs that were missed

As the twins grew, Jesy noticed subtle differences — frog-leg positioning, unusual breathing patterns, bell-shaped stomachs — but was repeatedly reassured not to compare them to other babies because they were premature.

“I saw all the signs. But I had no idea.”

After moving to Cornwall for a quieter life, Jesy’s mother noticed the twins barely moved their legs. Soon after, Jesy realised they had stopped moving them altogether.

Tests revealed poor muscle tone and alarming neurological signs. Jesy began researching symptoms herself — and SMA kept appearing.

“I Googled it. And it said babies without treatment don’t live past two. I just knew in my heart.”

A private paediatrician later confirmed her worst fears during a Zoom call from his holiday.

“He said he was 95% sure it was SMA Type 1.”

“They were deteriorating in front of my eyes”

Jesy described watching her daughters’ strength fade daily while waiting for test results — time she believes could have changed everything.

She has since demanded the NHS expand the standard newborn heel-prick test to include SMA screening, noting it costs around £1 per baby and could prevent irreversible damage if caught early.