Jesy Nelson has moved fans to tears once again after sharing a tender clip of one of her baby daughters smiling with a feeding tube in her nose — just days after bravely revealing the heartbreaking truth about the condition affecting both of her twins.

The former Little Mix star, 34, posted the moment to Instagram Stories, showing her little girl being gently rocked, giggling despite the medical tubing. Writing over the video, Jesy said simply:

“I’m so in love with her laugh.”

It was a quiet, beautiful moment — and a reminder of the unimaginable reality she and partner Zion Foster are now living every day.

A diagnosis that changed everything

Earlier this week, Jesy confirmed that her eight-month-old daughters, Ocean Jade and Story Monroe, have both been diagnosed with spinal muscular atrophy Type 1 (SMA1) — the most severe form of the rare genetic muscle-wasting disease.

Only around 50 babies in the UK are born with SMA each year, and doctors have warned that it is unlikely the girls will ever be able to walk.

Both babies currently rely on feeding tubes to help clear their chests.

“I just want to be their mum — not their nurse”

In her first television interview since the diagnosis, Jesy fought back tears on This Morning as she opened up about the brutal reality behind the scenes.

“I just want to be their mum. I don’t want to be a nurse. It’s hard,” she admitted.

She revealed that the twins have already received a one-off gene-replacement infusion — treatment that can halt the progression of the disease.

“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.”

The girls 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. My whole life has completely changed. My house looks like a hospital — the hallway is full of medical equipment.”

Jesy also spoke about the guilt that haunts her.

“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 the warning signs were missed

The twins were born prematurely at 31 weeks last May, and Jesy initially focused only on keeping them breathing and warm.

It was her mum, Janice, who first insisted something wasn’t right after noticing changes in their leg movement and breathing patterns.

After months of appointments and uncertainty, Jesy confirmed on Sunday that both girls had SMA Type 1.

She has since vowed to campaign for newborn screening for SMA on the NHS, believing early testing could spare other families the same heartbreak.

What is SMA?

Spinal muscular atrophy is a genetic condition that damages the nerve cells in the spinal cord, leading to progressive muscle weakness and wasting. It affects a child’s ability to move, swallow and breathe — but does not affect intelligence.

Types of SMA:

• Type 1: Diagnosed within the first six months — the most severe

• Type 2: Diagnosed after six months

• Type 3: Diagnosed after 18 months

• Type 4: Rare adult-onset form

Common symptoms include:

• Weak or floppy arms and legs

• Difficulty sitting, crawling or walking

• Muscle twitching

• Swallowing and breathing problems

Around 1 in 40–60 people carry the faulty gene. If both parents are carriers, there is a 25% chance their child will be born with SMA. The condition affects roughly 1 in 11,000 babies.

Through tears, exhaustion and heartbreak, Jesy is holding onto hope — one smile, one laugh, one feeding-tube video at a time.