Jesy Nelson has revealed that she has been told that her twin babies will ‘never walk’.
The 34-year-old former Little Mix star gave birth to twin daughters prematurely in May this year after a turbulent time during pregnancy, to say the least, having spent most of it hospitalised.
She has now revealed that the girls, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with a muscular disease, Spinal muscular atrophy (SMA), which she described as the ‘most severe muscular disease’.
‘The girls have now been diagnosed with a severe muscle disease called SMA type one. For those of you who don’t know what SMA type one severe
muscular disease that a baby can get.
‘It’s done for spinal muscular atrophy, which can affect, well, it does affect every muscle in the body, down to legs, arms, breathing, swallowing.
‘And essentially, what it does is, over time, it kills the muscle to the
body, and if It’s not treated in time, your baby’s life expectancy will not make it past the age of two.’
In the emotional video, she explained that her daughters were assessed at Great Ormond street where she was told that her daughters would both be disabled and ‘never able to walk’.
‘When they assessed the girls at Great Ormond Street, we were told that they will never be able to walk and never regain their neck strength, so they will be disabled.’
She added that looking forward, they have begun having treatment.
‘And so the best thing we can do right now is to get the treatment, and then just hope for the best. So hopefully the girls have had their treatment, which you’re so grateful for.
‘Because if they don’t have it, they will die.’
Symptoms of spinal muscular atrophy (SMA)
The symptoms of spinal muscular atrophy (SMA) affect everyone differently, but can include:
- bone and joint problems – such as an unusually curved spine (scoliosis)
- muscle weakness – such as floppy or weak arms and legs
- movement problems – such as difficulty sitting up, crawling or walking
- problems with breathing or swallowing
- twitching or shaking muscles (tremors)
Jesy said that she has had to put her daughter on ‘breathing machines’ and act as their nurse, a skill she has had to learn in the two weeks since the diagnosis.
‘The reason I wanted to make this video was becaues the last three months has honestly been the most heartbreaking time of my life. I literally feel like my whole life has done a 360,’ she concluded.
She added that she hoped that her girls would ‘defy the odds’ but wanted to share the diagnosis with the world so that it could help other parents diagnose their children as quickly as possible.
Jesy required close monitoring throughout her pregnancy and when her daughters were born, they had to spend time in the neonatal intensive care unit (NICU).
She previously shared that the twins were ‘living off one placenta’ due to pre-stage TTTS (twin-to-twin transfusion syndrome), which thankfully cleared up after surgery.
Jesy shares her daughters with Zion Foster, who she began dating in January 2022 but split last year, just before releasing their joint single, Mine. After a brief period apart, they got back together.
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