Jesy Nelson has revealed devastating health news after welcoming her twin girls eight months ago.
In an emotional video shared on her Instagram on Sunday, the former Little Mix star explained that after ‘the most gruelling three or four months’ her 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, 34, was tearful as she explained that the condition is ‘affects every muscle in the body down to legs, arms, breathing, swallowing and essentially what it does over time it kills the muscles in the body.’
Choking back tears the singer told the camera: ‘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.’
Jesy Nelson has revealed some devastating health news after welcoming her twin girls eight months ago
She explained that after ‘the most gruelling three or four months’ her daughters Ocean Jade and Story Monroe have been diagnosed with Spinal Muscular Atrophy
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 NICU.
The singer opened her video by explaining that it was her mother who first noticed the twins were not moving as much as expected.
Jesy and Zion also realised the girls were struggling to feed properly, but were reassured by health visitors that as their babies were born premature they may be delayed in hitting certain milestones and not to compare their children to others.
‘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 then explained.
‘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.
‘It’s the most scary overwhelming feeling of emotions not being able to feel like you can protect your babies.
‘Naturally as a mother you just want to hold them and comfort them when they cry but you can’t because there are what feels like a million wires coming out of them and tubes and masks in the way with people poking and prodding them, it breaks your heart into a million pieces.
‘Having them reunited for the first time ever today was the most magical feeling I will never be able to describe. The strongest little girls I’ve ever known who really do have the most inspiring story to tell.’
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‘.
He told OK!: ‘I think it’s at these times when you really, really know what love you have and what your relationship means.
Ocean Jade and Story Monroe were born at just 31 weeks old, after Jesy was diagnosed with twin-to-twin transfusion syndrome (TTTS)
‘And I think for me and Jess, this has just taken it to a whole other level of us knowing we are literally made for each other.’
He said the couple had also tried to make the hospital as much of a home as possible.
‘There’s a couch that turns into a bed that we pushed next to the hospital bed, so we’ve made our own double bed.
‘And it’s like we’ve moved in. The nurses just said, “Oh, my God. It looks so nice in here. It looks so homely.”‘
Jesy announced she was expecting twins with her boyfriend Zion back in January after rumours they had split.
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 then introduced the star to rap influences, and he began listening to Chris Brown, Lil Wayne and Usher.
Zion then decided to pursue music, recording his own tunes and sharing them online via SoundCloud.
