Jesy Nelson revealed back in January that her twins had been diagnosed with SMACredit: Instagram/JesynelsonOcean Jade and Story Monroe were born prematurely at just 31 weeksCredit: Instagram/@jesynelsonJesy shared a video of her daughter’s ‘ballerina’ leg exercises amid their SMA diagnosisCredit: Instagram
It 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 just two years.
Jesy and her ex-fiancee Zion Foster have been told it is unlikely the girls will ever walk, and may face serious breathing and swallowing difficulties.
The brave mum-of-two has been keeping her fans updated on the twins condition on social media.
Jesy, 34, has now shared a sweet clip of the twins doing their “ballerina” exercises to keep their legs mobile.
Speaking to one of the twins in the video, she said: “Are you gonna show them how you move your legs? Your a little ballerina, come on.
“Good girl. Little ballerina, yes you are.”
Progressive resistance training (PRT) with a little resistance band has the potential to increase strength and increase motor function in children and young adults with SMA, according to the National Institute of Health.
Jesy panned the camera up to her daughter’s face and she seemed super chilled as she bent and unbent her leg.
The tot was spotted with her feeding tube in her nose as it helps to clear their chests.
The former Little Mix singer recently released a fly-on-the-wall Amazon Prime documentary.
The series, which climbed to number one in Amazon’s viewing charts, follows her shock departure from Little Mix in 2020 and her journey tomotherhoodwith hernow ex-boyfriend Zion.
Since revealing her twins’ diagnosis, Jesy is now campaigning for the NHS to expand the standard heel prick test to screen for SMA1.
She says the test, which costs around £1, could have “saved their legs” by giving them access to treatment sooner.
If the twins had been tested and treated in time, there was a chance they would have avoided disability.
Former Little Mix star Jesy is campaigning for the NHS to include SMA1 testing in the standard baby heel prick testCredit: Shutterstock Editorial
JESY Nelson has shared an adorable new video of her giggling twin girls.
The pop star’s mum Janice can be seen holding one of the twins who erupts into laughter as her nan nuzzles her face into her neck.
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Jesy Nelson has shared adorable new video clips of her baby daughtersCredit: InstagramJesy admires her girls’ hair in the videosCredit: Instagram
In another clip, Jesy, 34, can’t help but chuckle about her daughter’s little mullet hairstyle, while she likens the other to a Cabbage Patch doll as she runs her fingers through her hair.
Nine-month-old sisters Ocean Jade and Story Monroe look happy and well-loved in the sweet footage on Instagram.
The incurable condition causes muscles to waste away, but early detection and treatment can significantly improve prognosis. The girls have had gene therapy infusion to prevent their muscles from deteriorating, but damage already suffered cannot be reversed.
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.
Only around 50 children in the UK are born with the condition a year.
The former Little Mix star and mum-of-two has seen her Amazon documentary on her parenthood journey hit number one spot while continuing her fight for life-saving SMA tests.
Recently, she became emotional about the struggles her twins will face growing up.
Jesy revealed she “burst into tears” after receiving the special feeding chairs her daughters will need.
She admitted the arrival of the equipment brought home the reality of their condition.
She posted a photo of one of the special feeding chairs to her Instagram story.
Jesy documented her pregnancy and girls’ health struggle in a six-part Amazon Prime seriesCredit: Prime VideoLittle Ocean Jade and Story Monroe were born last MayCredit: Instagram/@jesynelson
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.
It showed a pink cushioned chair with straps, a headrest, a tray, a foot stand, handlebars, and wheels.
She wrote: “So the girls need special feeding chairs that came yesterday, and I couldn’t help but burst into tears yesterday when I saw them.
“It just made me feel so sad as it’s just another reminder of another obstacle we have to tackle. Do any other SMA mummies feel this way?”
In her first TV interview since revealing the twins had SMA, Jesy 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.
“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.”
Since revealing her twins’ diagnosis, Jesy has called on theNHSto expand the standard heel prick test to screen for SMA1.
Large-scale trials are currently taking place, though Jesy is pushing Health Secretary Wes Streeting to speed up the process.
Jesy has split with baby daddy Zion FosterCredit: ShutterstockShe met Health Secretary Wes Streeting to campaign for change to heel prick tests for babiesCredit: ITVShe recently shared a snap of her daughter after she pulled out her feeding tubeCredit: Instagram
