Jesy Nelson has melted hearts after sharing an emotional glimpse of her baby daughter using a feeding tube — just days after bravely revealing the heartbreaking truth about her twins’ SMA diagnosis.
The former Little Mix star, 34, has left fans in tears this week as she spoke openly about the life-changing condition affecting her eight-month-old daughters, Ocean Jade and Story Monroe, whom she shares with partner Zion Foster.
The twins have been diagnosed with spinal muscular atrophy (SMA Type 1) — the most severe form of the rare muscle-wasting disease — and doctors have warned it is unlikely the girls will ever be able to walk.
Only around 50 babies in the UK are born with SMA each year.
But determined to remain positive, Jesy posted a beautiful clip to her Instagram Stories showing one of her daughters smiling and laughing while being gently rocked, with a feeding tube visible in her nose.
Both girls currently require feeding tubes to help clear their chests.
Captioning the tender moment, Jesy wrote:
“I’m so in love with her laugh.”
Jesy’s Heartbreak
In her first TV interview since the diagnosis, Jesy fought back tears while speaking to This Morning hosts Cat Deeley and Ben Shephard.
“I just want to be their mum. I don’t want to be a nurse. It’s hard,” she admitted.
She revealed the twins have already received a one-off gene-replacement infusion.
“They’ve had their treatment, thank God. It puts the gene back in their body that they don’t have. It stops the muscles from continuing to die. But anything that’s gone, you can’t get back.”
Jesy shared that her daughters now attend Great Ormond Street Hospital twice a week for physiotherapy.
“They’re still smiling, they’re still happy and they have each other. That’s what I’m so grateful for. All I can do is give them positive energy and keep doing physio.
“My whole life has completely changed. My house looks like a hospital — the hallway is full of medical equipment.”
The singer admitted she struggles with guilt.
“I potentially could have saved their legs. I don’t think I’ll ever accept it. All I can do now is fight for change.”
How It Was Discovered
Jesy gave birth prematurely at 31 weeks in May last year. She initially focused on keeping her babies breathing and warm, unaware of early warning signs.
It was her mum, Janice, who eventually insisted something was wrong after noticing their leg movement and breathing patterns.
After months of appointments, Jesy confirmed on Sunday that both babies had been diagnosed with SMA Type 1.
She has since vowed to campaign for SMA1 screening to be offered at birth on the NHS.
What is Spinal Muscular Atrophy (SMA)?
SMA is a genetic condition that weakens muscles by damaging the nerve cells in the spinal cord. It affects a child’s ability to walk, eat and breathe.
Types of SMA:
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Type 1: Diagnosed within the first six months of life — the most severe form
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Type 2: Diagnosed after six months
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Type 3: Diagnosed after 18 months
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Type 4: Rare adult-onset form
Common symptoms include:
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Weak or floppy arms and legs
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Difficulty sitting, crawling or walking
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Twitching muscles
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Swallowing and breathing problems
SMA does not affect intelligence.
Around 1 in 40–60 people carry the faulty gene, and if both parents are carriers, there is a 25% chance their child will be born with the condition. It affects approximately 1 in 11,000 babies.
Source: https://www.dailymail.co.uk/
