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Jesy Nelson has revealed her twin daughters have been fitted with leg splints as she shared an emotional update on their health battle on Thursday.
The Little Mix star, 34, welcomed her daughters Ocean and Story in May with her ex-fiancé, Zion Foster, but in January revealed that both babies had been diagnosed with genetic neuromuscular disease, Spinal Muscular Atrophy Type 1 (SMA1).
The condition weakens the muscles by affecting the motor nerve cells in the spinal cord, and Type 1 is the most common and severe form, with life expectancy estimated at less than two years without medical intervention.
Since sharing her twins’ health battle, Jesy has openly documented the challenges of managing their diagnosis on social media, and in a new Instagram video, she revealed they will be using leg splints to flatten out their ‘pointed’ feet.
She told her followers that she was ‘sad’ to see her babies would need the splints, as it was another ‘reminder’ of their health struggles they were facing.
Jesy said: ‘So today, I had to go pick up the girls’ splints because their feet are pointing, and they need to be flattened out. It made me really sad.’
The star then showed the tiny leg splints her daughters would be wearing, with Story’s covered in hearts while Ocean’s had butterflies.
‘Have you ever seen anything cuter in your life?’ Jesy added as she held up the baby-sized splints for the camera, before sadly saying: ‘Made me sad though, because it’s just another reminder.’
Despite her nine-month-old daughters’ devastating prognosis that they may not live beyond the age of two, Jesy last month explained that despite the tragic news she has decided to keep filming her Prime Video series as she fights to ‘make a change’.
In a Q&A, she said: ‘I just hope people continue to watch the next part of the journey. When the girls got their diagnosis, we decided that we wanted to continue filming.
‘As hard as it was, we were like, “You know what? There’s a reason you guys are here, and we’ve got to make the best out of this situation”.’
Jesy continued: ‘I’m sure you guys are aware, like, I’m trying to get it [SMA] made part of the heel prick test. That’s my main goal right now, as well as looking after my beautiful girls.
‘I haven’t even seen it back yet, but I already know it’s going to be tough. But I’m just so happy that we’ve been able to document everything, because I really believe that we’re going to make a change. Like, I feel it.
‘I love how dedicated people are to spreading awareness about everything that I’ve been through and this [programme] is going to shed even more.’
Genetic neuromuscular disease SMA1 causes progressive muscle weakness and wasting due to motor neuron loss.
Speaking to Jamie Laing on his Great Company podcast, Jesy, who recently split from the children’s father Zion, 26, said she is hopeful that her babies will defy the odds now that they are receiving treatment and go on to have a longer life expectancy.
Jesy said: ‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body.
‘Their muscles are now deteriorating and wasting away, and if you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.
‘It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation… And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.’
Former Little Mix singer Jesy has demanded the NHS expand the standard heel prick to check for spinal muscular atrophy.
Tests cost around £1 each and the twins ‘could have saved their legs’ with early treatment.
Moreover, Jesy’s twins had TTTS [Twin-to-twin transfusion syndrome] while in the womb and were born prematurely at 31 weeks.
She said: ‘They had TTTS which affects a rare percentage of identical twins, and that means, it’s when there’s only one placenta that both the babies feed off of, and it’s cr*p for both of them, because one will get more of the nutrients and one won’t.
‘But either way, doesn’t matter. Even the baby that’s getting too many nutrients, it still affects them. It’s not good. And so if you don’t get treatment for that, they will die. It’s like, 95 per cent, that they won’t survive.’
