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Jesy Nelson announces new TV documentary as she campaigns for SMA tests after devastating prognosis means her twins, nine months, may not live beyond the age of two

Дата публикации: 06-02-2026 03:54:51

The singer, 34, recently addressed the devastating prognosis that Ocean Jade and Story Monroe, aged nine months, may not live beyond the age of two.

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Jesy Nelson announced a new TV documentary on Thursday as she continued to campaign for SMA tests at birth after her twins diagnosis. 

The singer, 34, recently addressed the devastating prognosis that Ocean Jade and Story Monroe, aged nine months, may not live beyond the age of two. 

Jesy explained that despite the tragic news they decided to keep filming as she fights to 'make a change.'

Speaking in London ahead of her Amazon Prime documentary, Jesy Nelson: Life After Little Mix, she also discussed her next plans in a Q and A on Tuesday.

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 Nelson announced a new TV documentary on Thursday as she continued to campaign for SMA tests at birth after her twins diagnosis

The singer, 34, recently addressed the devastating prognosis that Ocean Jade and Story Monroe, aged nine months, may not live beyond the age of two (pictured with ex Dion Foster)

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 Foster, 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.'

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' 

Jesy continued: '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'

Speaking to Jamie Laing on his Great Company podcast, Jesy, who recently split from the children's father Zion Foster, 26, said she is hopeful that her babies will defy 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, if you 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.'

What is spinal muscular atrophy?

Spinal Muscular Atrophy (SMA) is a disease that weakens a patient's strength by affecting the motor neuron cells in the spinal cord.

It results in gradual muscle wasting and the severity of symptoms varies by type.

Type 1 SMA is the most severe and is evident at birth. The weakening of muscles means sufferers cannot sit and usually leads to death by the age of five.

Type 2 is intermediate with the sufferer being unable to stand.

Type 3 is mild and makes it difficult to get up from a sitting position.

Type 4 sufferers don't have symptoms until they are in their 20s or 30s.

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