Jesy Nelson shares update from hospital as she reveals she is fighting for SMA1 screening at birth after her twin’ diagnosis because early treatment helps to prevent severe muscular disease

Jesy Nelson has revealed she fought to have her twin daughters screened for SMA1 at birth after they were able to avoid severe muscle disease with early treatment.

On Sunday, the former Little Mix star, 34, revealed that after ‘the most grueling three or four months’, her eight-month-old daughters Ocean Jade and Story Monroe have been diagnosed with Spinal Muscular Atrophy.

Genetic neuromuscular disease causes progressive muscle weakness and wasting due to motor neuron loss.

Jesy broke down in tears as she explained that the condition ‘affects every muscle in the body, from legs, arms, to breathing and swallowing’, adding: ‘What it actually does over time is kill the muscles in the body.’

Now the singer has shared an update from the hospital, revealing that she has filed a petition to have newborns screened for SMA from birth and is ‘determined and ready to fight’ to get it approved.

If SMA1 is treated pre-symptomatically (at or near birth), the disease is largely preventable, and many children develop with few or no symptoms.

The 34-year-old singer announced on Sunday that her eight-month-old daughters, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy.

Opening a new Instagram video filmed in a hospital, Jesy said: ‘Hey everyone, I just wanted to come here to say thank you from the bottom of my heart for all the support and lovely messages you’ve given me and other families dealing with this terrible diagnosis.

‘I’ve been truly overwhelmed by the level of support and just want to say thank you for sharing, learning, taking the time to watch and sending your lovely messages, thank you so much.

‘I also want you to know that I am starting a petition to get a heel prick test for newborn screening from birth and I want you to know that I am very determined to make this happen and will fight as much as I can to make this part of newborn screening available.

‘It’s currently under review so I’ll keep you updated and also talk about my baby girls on This Morning tomorrow. I love you all so much and can’t thank you enough for your support. ‘We still have a long way to go, but I love you so much.’

On Sunday, Jesy said doctors initially ignored her fears that her twin babies would not reach milestones because they were born prematurely.

In the emotional video she shared on Instagram, she explained that her mother noticed for the first time that the twins’ legs were not as mobile as they should be.

Jesy then took them to the doctors to have them checked and routine health visitors also checked them.

She explained: ‘A few months ago my mother noticed that the girls weren’t showing as much movement in their legs as they should.

The singer shared a development from the hospital, explaining that she had submitted a petition to screen newborn babies for SMA from birth and was “determined” to see this approved.

If SMA1 is treated pre-symptomatically (at or near birth), the disease is largely preventable, and many children develop with few or no symptoms.

After thanking fans for their support, Jesy said: ‘Just wanted to tell you, I’m starting a petition to get a heel prick test at newborn screening from birth.’

‘This wasn’t much of a concern to me at the time because from the moment I left the NICU (Neonatal Intensive Care Unit) I was told ‘your babies are premature, so don’t compare your babies to other babies’.

‘They won’t hit the same milestones, they’ll take them for what they are and when they do, they’ll be where they need to be.’

Health visitors also reassured Jesy and her partner Zion after they were concerned about their nutrition.

But they were told the babies were ‘wonderful and healthy’ and there was nothing to worry about.

Later, after further examination, they were diagnosed with SMA Type 1.

The singer, unable to hold back her tears, said in her video: ‘If not treated in time, your baby’s life expectancy will not exceed two years of age.’

He explained that Great Ormond Street had advised that the girls ‘will probably never walk or regain their neck strength, so they will be disabled’.

He added: ‘The best we can do right now is get them treated and hope for the best.’

Jesy welcomed her twin daughters with partner Zion on May 15, 2025.

‘I want you to know that I am very determined to make this happen and will fight as hard as I can to make this part of newborn screening happen.’

He added: ‘It’s currently under review so I’ll keep you updated and also talk about my girls on This Morning tomorrow.’

The girls spent most of her difficult pregnancy in the hospital before giving birth at 31 weeks, followed by a stay in the NICU.

“After the most grueling three, four months and endless appointments, the girls have now been diagnosed with SMA Type 1, a serious muscle disease,” she explained in the video.

“Treating the girls was a very quick process because time is of the essence with this disease,” Jesy said of the twins’ treatment plan at Great Ormond Street Hospital in London, adding that there is no cure for SMA.

He said the girls had been receiving treatment for the last few weeks and for this he said: ‘I am very grateful because without treatment they will die.’

‘There have been endless hospital appointments, I feel like the hospital has become my second home and I feel like I have to become a nurse because I have to put them on breathing machines and do things that no mother should have to do with her child.’

Jesy broke down as she admitted: ‘The last few months have been the most heartbreaking time of my life. I literally feel like my whole life has turned 360 degrees. I almost feel like I’m suffering from a life I thought I would have with my children.

‘I truly believe that with the right help my daughters will defy all odds and do things that have never been done before.’

He ended his video by explaining that he wanted to help others and raise awareness about early diagnosis in children and signs to look out for, such as drooping, bell-shaped abdomen and rapid breathing in babies.

He also emphasized the need for a heel blood test at birth which could ‘literally save his legs and many parts of his body’.

Ocean Jade and Story Monroe were born at just 31 weeks after Jesy was diagnosed with twin-to-twin transfusion syndrome (TTTS); This is a rare condition that may put one or both babies at risk.

The twins were receiving treatment in the Neonatal Intensive Care Unit (NICU) before being discharged from the hospital.

On Sunday, Jesy broke down in tears as she said doctors initially ignored her fears that her twin babies would not reach milestones because they were born prematurely.

Jesy announced that she was expecting twins from her boyfriend Zion in January 2025, following rumors that they had broken up. They got engaged later that year

Jesy recently opened up about her premature birth, telling fans: ‘Nothing or no one can prepare you for the NICU as a parent.

In March 2025, Jesy had to undergo an emergency procedure due to complications during her pregnancy and was advised to remain in hospital until at least her 32nd week of pregnancy.

Throughout the ordeal, her partner Zion admitted that he and Jesy, who was seven months pregnant at the time of her surgery, ‘grew to understand each other on a deeper level’.

Jesy announced that she was expecting twins from her boyfriend Zion in January 2025, following rumors that they had broken up.