Jesy Nelson shares clip of her daughter with a feeding tube after breaking down in tears on This Morning while discussing her twins’ SMA diagnosis

Jesy Nelson has shared a clip of one of her twin daughters with a feeding tube after revealing their muscle weakness diagnosis.

The former Little Mix star, 34, revealed on Sunday that after ‘the most gruelling three or four months’ her daughters Ocean Jade and Story Monroe have been diagnosed with Spinal Muscular Atrophy (SMA1).

‘Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms,’ according to the NHS website.    

The singer, who shares her children with fiancé Zion Foster, took to Instagram on Saturday with a heartwarming video with one of her children.

In the clip, Jesy coos at her daughter who squeels and laughs in response while tucked up in a baby bouncer chair. Her daughters have feeding tubes in their noses to help clear their chests.

Alongside the post, the pop star wrote: ‘So in love with her little laugh’.

It comes after Jesy broke down in tears on Wednesday’s episode of This Morning as she shared a heartbreaking update on her twin daughters’ muscle disease.

The singer admitted that her home now ‘looks like a hospital’ after learning how to look after her twins and cater to their complex needs as she shared the most difficult aspects of the diagnosis. 

Getting very emotional about her girls, Jesy said: ‘We’ve been told that they will probably never walk, they’ll probably never regain their neck strength. They are gonna be in wheelchairs.

‘There’s been so many stories where parents have been told this and then their children have gone on to do incredible things, so I believe that you’ve just got to manifest that. 

‘They are still smiling, they’re still happy. They have each other, and that’s like the main thing that I’m like so grateful for because they could be doing this by themselves, but they’re twins and they’re going through this together.

‘My whole life has just completely changed. If you came to my house, it looks like a hospital. 

‘My whole hallway is filled up with medical stuff and it’s just crazy how you can go from one extreme to the next.

‘Story has to be on a breathing machine at night because she isn’t strong enough to breathe by herself at night, they have to have cough assists machines to help them cough, I have to put feeding tubes down their nose to like get out secretions off their chest. 

‘I’ve had to learn this within the space of a few days of getting their diagnosis, and it’s just so much to deal with while you’re also trying to deal with this like horrendous thing that’s just happened and still be a mum as well. 

‘That’s the part that I really, I’m still struggling with it, I won’t lie, but that is the part that like really gets me, is I just want to be their mum, I don’t want to be a nurse. 

‘All I can do is just try my best to be there for them. Give them positive energy.’

Looking back over the signs that the two girls had been battling the condition before their diagnosis, she added: ‘I actually knew and saw all of the signs before I even know knew what SMA was.

‘But when I left the NICU, it was hammered home to me, “Don’t compare your baby, they’re not going to reach the same milestones, take them as they are” because they were premature. 

‘When I took them home from NICU, the only thing I was really concerned about at that time was like checking their temperature, making sure they’re still breathing. I’m not checking to see if their legs are still moving…  

‘And that’s what’s frustrating knowing that for me, if this was the cards I was always going to get dealt and there was nothing I could do about it, then it’s almost easier for me to accept.’

Heaping praise on her mum for spotting the signs that eventually prompted her to take further action, she said: ‘It took for my mum to be like, “They don’t move their legs how they should be moving”.

‘Bless my mum, she’s a worrier, and I just thought my mum was being a worrier – but I noticed they were moving [their legs] less and less and less, until it just stops.

‘That is why it’s so important and vital to get treatment from birth and that it’s detected from birth.’ 

Opening up on her decision to share her story with the world, Jesy continued: ‘I wanted it to get as much reach as possible to raise awareness about it, it’s what I wanted to do. 

‘If I’d seen someone else’s video, maybe, just maybe I could have prevented this from happening if I’d have seen a video and caught it early enough. 

‘Yes, I could have dealt with it privately, but at the same time I’m like, I have this platform and I almost feel like I’ve got a duty of care to like raise awareness about it.

‘I don’t know if this is even crazy to say this, like it feels selfish to keep this to myself and not potentially save a child’s life. I’m going to shout to the rooftops about this.

‘I could have saved their legs… I don’t think I’m ever going to get over this or accept it, but I’m going to try my best to make change.’ 

Jesy has also revealed that she has put a petition in to try and get newborn babies screened from birth for SMA and is ‘determined and ready to fight’ to see it approved. 

If SMA1 is treated pre-symptomatically (at or near birth), the disease can be largely prevented, and many children develop with minimal or no symptoms.