Jesy Nelson has revealed some 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 and Story have been diagnosed with Spinal Muscular Atrophy.
The genetic neuromuscular disease causing progressive muscle weakness and wasting due to motor neuron loss.
Jesy 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 camers: ‘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 ‘will properly never going to be able to walk, never regain their neck strength so they wil be disabled so the best thing we can do right now is get them treatment and hope for the best.’
Jesy welcomed her twin daughters, Ocean Jade and Story Monroe, with partner Zion on May 15, 2025. She has spent much of her difficult pregnancy in hospital before the girls were delivered prematurely which was followed by a stay in NICU.
Jesy Nelson has revealed some devastating health news after welcoming her twin girls eight months ago
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 servere muscular disease – SMA Type 1.’
‘Once the girls got treated, it was a very rapid process because time is of the essence with this disease’ Jesy then explained of the twins’ treatment plan from Great Ormond Street Hospital in London.
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.’
‘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 video 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.