Jesy Nelson breaks down in tears as she reveals her eight-month-old twins have been diagnosed with a severe muscular disease which will leave them unable to walk: ‘I am grieving a life I thought I was going to have with my children’

Jesy Nelson revealed the devastating health news after welcoming her twin daughters eight months ago.

In an emotional video shared on Instagram on Sunday, the former Little Mix star revealed that after ‘the most grueling three or four months’, her 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, 34, 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.’

Unable to hold back her tears, the singer told the camera: ‘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’.

She revealed that her daughters, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy after ‘the most grueling three or four months’.

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.

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

The singer opened her video by explaining that her mother was the first to notice that the twins were not moving as much as expected.

Jesy and Zion also noticed the girls were struggling to eat properly, but their health visitors reassured them that their babies could be delayed in reaching certain milestones because they were born prematurely and that they should not compare their children to others.

She later explained: ‘After the most grueling three to four months and endless appointments the girls have now been diagnosed with SMA Type 1, a serious muscle disease.’

“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, 34, burst into tears as she explained how the condition ‘affects every muscle in the body, from legs, arms, to breathing and swallowing’.

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.

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

‘Not being able to feel that you can protect your babies is the most frightening, overwhelming feeling.

‘Naturally as a mother you want to hold them and comfort them when they cry but you can’t because there’s something that feels like a million wires coming out of them and there’s tubes and masks in the way and people are poking and prodding them; It breaks your heart into a million pieces.

‘Seeing them reunited for the first time today was the most magical feeling that I can never describe. ‘They truly are the strongest little girls I know who have the most inspiring story to tell.’

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’.

She told OK!: ‘I think in these times you really, really know what kind of love you have and what your relationship means.

Ocean Jade and Story Monroe were born at just 31 weeks after Jesy was diagnosed with twin-to-twin transfusion syndrome (TTTS).

‘And I think for me and Jess it took it to a whole other level of knowing that we were literally made for each other.’

He said the couple also tried to turn the hospital into a home as much as possible.

‘There’s a sofa that turns into a bed that we pushed next to the hospital bed, so we made our own double bed.

‘And it’s like we moved here. The nurses said, “Oh my God. It looks so nice in here. It looks so plain.”‘

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

Originally from South London, Zion was born and raised in a Nigerian household by his mother and grew up listening to Gospel music.

It was his football coach who later introduced the star to his rap influences, and he started listening to Chris Brown, Lil Wayne, and Usher.

Zion then decided to dabble in music, recording his own songs and sharing them online via SoundCloud.