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 is fighting for SMA1 screening at birth after her twin daughters could have avoided severe muscular disease with early treatment.

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

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

Jesy was tearful as she explained that the condition 'affects every muscle in the body down to legs, arms, breathing and swallowing', adding that 'essentially what it does over time is it kills the muscles in the body'.

Now, the singer has shares an update from hospital as she revealed that she has put a petition in to try and get newborn babies screened from birth for SMA and is 'determined and ready to fight' to see it approved. 

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

Opening up in a new Instagram video filmed in a hospital, Jesy said: 'Hey guys I just wanted to come on here to basically say thank you genuinely so much from the bottom of my heart for the outpour of support and beautiful messages for me and other families dealing with this horrible diagnosis. 

'I am genuinely so overwhelmed from the level of support and I just want to say thank you for sharing, learning about it, took the time to watch it and send their beautiful messages, thank you I appreciate it so much. 

'I also wanted to let you guys know, I am starting a petition to try and get the newborn screening heel prick testing from birth and I just need you to know that I am so determined to make this happen and 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 and also I will be on This Morning tomorrow talking about my baby girls. I love you all so much and I can't thank you enough for the support. We have along way to go but I love you so much.' 

On Sunday, Jesy said that doctors initially dismissed her fears about her baby twins not hitting milestones because they were born prematurely.

In her emotional video posted to Instagram she explained that her mum had first noticed that the twins' legs weren't as mobile as maybe they should be.

Jesy then took them to the doctors to get things looked at and routine health visitors had also checked them over.

She 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'.'

Health visitors also offered reassurance when Jesy and her partner Zion also grew concerned about their feeding.

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

After later undergoing further tests, they were given the SMA Type 1 diagnosis.

Choking back tears the singer said in her video: 'If it's not treated in time your baby's life expectancy will not make it past the age of two.'

She went on to explain that Great Ormond Street have advised that the girls 'are probably never going to be able to walk or regain their neck strength so they will be disabled.'

She added: 'The best thing we can do right now is get them treatment and hope for the best.'

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

She spent much of her difficult pregnancy in hospital before the girls were delivered at 31 weeks which was followed by a stay in the NICU.

'After the most gruelling three, four months and endless appointments the girls have now been diagnosed with a severe muscular disease - SMA Type 1,' she explained in her video.

'Once the girls got treated, it was a very rapid process because time is of the essence with this disease' Jesy said of the twins' treatment plan from Great Ormond Street Hospital in London, adding that there is no cure for SMA.

She said the girls have had their treatment over the past few weeks which 'I am so grateful for because without it they will die.'

'It has just been endless hospital appointments, I feel like the hospital has become my second home and I feel like I have had to become a nurse because I have to put them on breathing machines and do stuff that no mother should have to do with their 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 done a 360. I almost feel like I am grieving a life I thought I was going to have with my children.

'I truly believe my girls will defy all the odds with the right help and do things that have never been done.'

She ended her video by explaining she wanted to make the post to help others and raise awareness of early diagnosis in children and the signs to look for which include floppiness in babies, bell-shaped bellies and rapid breathing.

She also stressed the need for a heel prick test at birth 'which can literally save their legs, and so many parts of their body.'

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

Before being released from hospital the twins had been receiving treatment in a Neonatal Intensive Care Unit (NICU).

Jesy recently opened up about their premature births, telling fans: 'Nothing or no one will ever be able to prepare you as a parent for NICU.

In March 2025 during her pregnancy, Jesy had to undergo an emergency procedure after suffering complications and was advised to remain in hospital until she was at least 32 weeks into her pregnancy.

Throughout the ordeal, her partner Zion admitted he and Jesy, who was seven months pregnant at the time of her procedure, had 'grown to understand each other on a deeper level'.

Jesy announced she was expecting twins with her boyfriend Zion back in January 2025 after rumours they had split.