Jesy Nelson has shared a sweet photo of her baby twins holding hands and watching TV in hospital amid their devastating spinal muscular atrophy (SMA) type 1 diagnosis.
The singer, 34, who shares her nine-month-old daughters Ocean and Story with ex Zion Foster, took to Instagram on Tuesday to share a snap of her girls with feeding tubes in their noses as they both lay on a hospital bed side by side.
The genetic neuromuscular disease SMA1 causes progressive muscle weakness and wasting, and feeding tubes are required due to severe swallowing, sucking and breathing difficulties.
Story and Ocean were seen holding hands as they wore matching white baby grows and were tucked into a knitted brown blanket.
She wrote: ‘Watching TV together holding hands, my heart [crying emoji]’.
On Monday, Jesy also shared another photo of her baby girls with feeding tubes in their noses as she pushed them in their prams.
Jesy Nelson has shared a sweet photo of her baby twins holding hands and watching TV in hospital amid their devastating spinal muscular atrophy (SMA) type 1 diagnosis
The singer, 34, shares her nine-month-old daughters Ocean and Story with ex Zion Foster, and took to Instagram on Tuesday to share the snap of her girls
Ocean and Story were wrapped up warm in matching pink hats, brown teddy bear coats and a knitted blanket.
Jesy captioned the snaps ‘Ocean bear’ and ‘Story bear’.
The former Little Mix star also posted photos of herself looking glam as she caught up with pals after sharing the heartbreaking reality of her daughters’ daily lives.
Jesy told the Daily Mail the medical procedures her babies must endure each day leave her feeling like she’s hurting them as they cry and scream.
She described caring for the twins as an emotional rollercoaster, with some days being ‘really f***ing s***’ and others slightly lighter.
The singer is campaigning for SMA testing to be included in the newborn blood spot test, saying early diagnosis could dramatically improve a child’s future.
She and ex-partner Zion never expected to be caring for their babies in such a way, and Jesy says having to provide for their medical needs is a daily struggle.
Jesy told the Daily Mail: ‘Every day is so full-on – I can speak about it, but I’ll never be able to explain how intense it is until you see it.
On Monday, Jesy also shared another photo of her baby girls with feeding tubes in their noses as she pushed them in their prams
The genetic neuromuscular disease SMA1 causes progressive muscle weakness. Pictured: Jesy pushing the babies in their prams last month
The former Little Mix star also shared photos of herself looking glam as she caught up with pals after sharing the heartbreaking reality of her daughters’ daily lives
‘There are a lot of medical things I have to do which I am still really struggling with, I’ll be honest with you. I never expected that to be part of my life and it’s tough.
‘They’re so tiny and I have to do things which I know are doing them good but at the time, when they’re crying and screaming, it feels like I’m hurting them and I hate that I have to be the person to do that. I just want to be their mum.’
When asked about a typical day with her twin daughters, Jesy said it’s impossible to describe, as no day is ever the same emotionally.
She added: ‘I don’t know how to explain my life in the day because sometimes it’s really f***ing s*** and then, other times, I don’t necessarily forget about their diagnosis but there are days [that] are lighter and they’re not as heavy.
‘So many mums have told me that’s what it’s going to be like and that’s why I need to take each day as it comes.
‘It’s a rollercoaster; I don’t feel like this is going to be a steady journey at all.’
She has also addressed the tragic prognosis that Ocean and Story may not live beyond the age of two.
Speaking to Jamie Laing on his Great Company podcast, Jesy said she was hopeful that her babies will defy the odds now that they are receiving treatment.
‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body,’ she said.
‘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.
Jesy told the Daily Mail the medical procedures her babies must endure each day leave her feeling like she’s hurting them as they cry and scream
The singer is campaigning for SMA testing to be included in the newborn blood spot test, saying early diagnosis could dramatically improve a child’s future (with ex Zion Foster)
‘It’s not OK, 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 test to check for spinal muscular atrophy.
Tests cost around £1 each and it ‘could have saved [the twins’] legs’ by giving them access to earlier treatment.
Moreover, Jesy’s twins had twin-to-twin transfusion syndrome (TTTS) while in the womb and were born prematurely at 31 weeks.
She said: ‘They had TTTS which affects a rare percentage of identical twins… 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.’
