JESY Nelson has made a heartbreaking confession about one of her twin daughters after she “pulled out her feeding tube”.
The 34-year-old welcomed twin daughters Ocean Jade and Story Monroe with ex , 27, in May 2025.
Jesy Nelson has revealed a heartbreaking confession about one of her twin daughtersCredit: Instagram/Jesynelson
Jesy told how tot Ocean had pulled out her feeding tubeCredit: Instagram
She gave birth to her twins prematurely and has since revealed they have Spinal Muscular Atrophy Type 1 (SMA1)Credit: Instagram
The at 31 weeks.
Last month, bravely revealed they have since been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1).
The former star and mum-of-two has seen her Amazon hit number one spot while continuing her fight for life-saving SMA tests.
During the documentary – and on her social media – Jesy has kept her followers up-to-date with her daughters’ battle.
In a new snap of little Ocean posted to her Instagram Stories, which saw the tot in a cream baby grow adorned with a tortoise and relaxing in her baby seat.
In her caption the Black Magic hitmaker wrote: “Ocean pulled out her feeding tube this morning.
“I forget what her little face looks like without it, we really take for granted the little things.
“What I would give to see her little face like this everyday”.
Previously, Jesy has shared a
She shared an adorable video of one of daughter’s with a feeding tube in her nose.
Both of her girls have feeding tubes put into their noses to clear their chests.
Spinal Muscular Atrophy (SMA) is a genetic condition that weakens the muscles by damaging motor nerve cells in the spinal cord.
It leads to progressive muscle wasting, and if untreated, the life expectancy of a baby with SMA Type 1 is two years.
Jesy and Zion have been told it is unlikely the girls will ever walk, and may face serious breathing and swallowing difficulties.
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a person’s strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
- Type 1 is diagnosed within the first six months of life and is usually fatal.
- Type 2 is diagnosed after six months of age.
- Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
- Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
What are the symptoms?
The symptoms of SMA will depend on which type of condition you have.
But the following are the most common symptoms:
• Floppy or weak arms and legs
• Movement problems – such as difficulty sitting up, crawling or walking
• Twitching or shaking muscles
• Bone and joint problems – such as an unusually curved spine
• Swallowing problems
• Breathing difficulties
However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.
How common is it?
The majority of the time a child can only be born with the condition if both of their parents have a faulty gene which causes SMA.
Usually, the parent would not have the condition themselves – they would only act as a carrier.
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get spinal muscular atrophy.
It affects around 1 in 11,000 babies.
Only around 50 children in the UK are born with the condition a year.
In her first TV interview since , Jesy gave fans an update on her girls.
She tearfully told 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”.
Jesy continued: “They’ve had their treatment, thank God. A one-off infusion. That puts the gene back in their body that they don’t have. It stops the muscles still working from dying. Any that have gone you can’t regain them back.
“Now it’s down to constant physio. We’ve been told they’ll probably never walk or regain their neck strength. They’ll probably be in wheelchairs.”
Jesy revealed how the twins were going to Great Ormond Street Hospital twice a week.
“They’re still smiling, they’re still happy and have each other. That’s the main thing I’m so grateful for because they could be doing this by themselves,” she continued. “All I can do is try my best to be there for them and give them positive energy, keep doing physio.
“My whole life has completely changed. If you came to my house it looks like a hospital. My whole hallway is filled with medical stuff. It’s crazy how you can go from one extreme to the next.”
Jesy also reflected on not understanding her daughters’ issues with their legs sooner.
“I potentially could have saved their legs. I don’t think I’ll ever be able to get over or accept it. All I can do is try my best and make change.”
Since revealing her twins’ diagnosis, Jesy has called on the to expand the standard heel prick test to screen for SMA1.
Jesy gave birth to her twins prematurely last MayCredit: Amazon Prime
She is now calling on the NHS to expand the standard heel prick test to screen for SMA1Credit: Shutterstock Editorial
Jesy and ex Zion Foster have split following the birth of their twinsCredit: Ruckas
Eze Chidiebere Paul
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