Jesy Nelson breaks down in tears as she reveals update on twins’ health in emotional TV interview after SMA diagnosis

JESY Nelson fought back tears during an emotional TV interview today after her twin daughters were diagnosed with a life-changing condition.

Ocean Jade and Story Monroe have been diagnosed with Spinal Muscular Atrophy (SMA), the most severe form of a rare muscle wasting disease and may never be able to walk.

Jesy told how she and partner Zion Foster’s lives have been turned on their heads, and how they are fighting to ensure other parents are educated on the cruel condition.

The emotional singer told hosts Cat Deeley and Ben Shephard: “I just want to be their mum. I don’t want to be a nurse. It’s hard”

Only around 50 children in the UK are born with the condition a year.

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.

BRAVE

Jesy Nelson says she’s ‘fighting’ for SMA1 screening at birth after twins’ diagnosis

TRAGIC TIME

Jesy Nelson says doctors dismissed her fears for twin babies

“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.”

Positive-minded Jesy said she will try and “manifest” the best possible outcome for her girls, who go 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.”

She revealed Story can’t breathe at night without a machine and both girls have feeding tubes put into their noses to clear their chests.

Jesy reflected on not understanding her daughters’ issues with their legs sooner, saying in a devastating moment: “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.”

The mum-of-two, who said she’s been “overwhelmed” by the support from fans, said she felt she had a duty to use her platform to educate others, adding it felt “selfish” not to share her situation.

It was her mum Janice who insisted to health professionals that something was wrong with the baby girls.

Jesy had been concentrating on ensuring the prematurely born pair were breathing properly and at the right temperature, rather than how their limbs were operating.

However, when she did flag concerns about their legs and bellies, she was told they were OK.

Last night Jesy insisted she’s “going to fight” to get SMA1 testing available on the NHS at birth.

The former Little Mix star, 34, gave birth to her little girls prematurely at 31 weeks in May last year.

In an Instagram story, Jesy said: “Hi guys, I just wanted to come on here to do another video to basically say thank you, genuinely so much from the bottom of my heart for just the outpouring of support and beautiful messages for me and so many other families that are dealing with this horrible diagnosis.

“I’m genuinely really overwhelmed by the amount of support.

“I just want to say thank you to everyone that shared it, to everyone that wants to learn about it, that’s taking the time to watch it and taking the time to send me beautiful messages.

“Thank you from me and the SMA community just appreciate it so much.”

The star then shared: “Also I just wanted to let you guys know that I am starting a petition to try and get SMA on the newborn screening heel prick testing from birth and I just need you to know that I am so determined to make this happen.

“So I am going to fight as much as I can to make this part of the newborn screening.

“It’s currently under review, so I will keep you updated with that one guys.”

Currently, the NHS does not include SMA testing in its newborn screening program. 

The heel-prick test, is a standard and minimally invasive procedure conducted within the first week of a newborn’s life.

This test screens for various genetic conditions, including SMA.

Jesy is calling for SMA to be added to the newborn heel prick test, to ensure other parents get an earlier diagnosis for a better prognosis. 

Janice noticed there could be something wrong but it wasn’t a concern as doctors had previously told her not to compare them to other babies as they were born nine weeks early.

Jesy explained: “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.

“It wasn’t really a concern to me at the time because from the minute I left NICU (Neonatal Intensive Care Unit), I was told ‘your babies are premature, so do not compare your babies to other babies.

“They won’t reach the same milestones, take them as they are and they will get where they need to be when they do’.”

The new mum was also reassured by health visitors, especially when the couple grew concerned about their feeding.

However, they were told the babies were “great and healthy” and there wasn’t anything to worry about.

Talking about how her twins began feeding less, she said: ‘We would take them to the GP, we were saying our babies are not feeding as frequently as they should.

“They were like ‘don’t worry it’s fine, just keep trying little and often’.

After undergoing tests for months, Ocean and Story were eventually diagnosed with the severe muscular disease, called SMA Type 1.

The Brit Award winner admitted it’s been “the most heartbreaking time of my life,” and her “whole life has done a 360.”

“I’m grieving a life I thought I was going to have with my children,” she emotionally said, before acknowledging that she is grateful to have them.

“I truly believe that my girls will defy all odds. And with the right help, they will fight this, and go on to do things that have never been done.”

Asma Khalil, Professor of Obstetrics and Maternal Fetal Medicine at St George’s Hospital, University of London, said: “My heart goes out to Jesy Nelson and her family.

“In premature twins, early signs of spinal muscular atrophy (SMA), such as floppiness, weak movement or feeding difficulties, can easily be mistaken for typical prematurity.

“This can delay vital diagnosis and treatment. SMA is rare but progressive, and early intervention makes a real difference.

“Parents should always feel empowered to raise concerns and ask for further assessment. Twins Trust, a charity that supports families with twins, triplets or more, often highlights that instincts matter, especially when it comes to premature babies, twins and triplets and early development.

“Jesy’s bravery in speaking out will help other families recognise the signs and seek support sooner.”

Jesy has been inundated with support from celebrity pals as well as her loyal followers.

Amy Childs said: “I’m so sorry jesy what your going through xx sending love and strength to you and your beautiful girls xxx.”

Megan McKenna wrote: “My heart is breaking for the pain you are in right now. Sending so many prayers and love to your beautiful girls.”

Jess Wright also commented, telling Jesy: “Sending you so much love Jesy. Love & strength.”

Ashley James also noted: “Jesy I’m so sorry. I’m thinking of you and your girls and sending love.’

“Jes, There are no words big enough for how unfair and heartbreaking this is. I am so deeply sorry,” wrote I’m A Celeb star Shona McGarty.

“My heart aches for you and for your beautiful little girls.”