Parents of child with same condition as Jesy Nelson’s twins reach out

Jesy Nelson took to This Morning last week to open up on the heartbreaking diagnosis received by her twin daughters that could mean they never walk. 

Now, two parents whose daughter was diagnosed with the same condition, and is wheelchair bound, have taken to the show to encourage the star. 

Parents Victoria and Gee joined Ben Shephard and Cat Deeley on the sofa on Monday morning to open up about daughter Sophia being diagnosed with Spinal Muscular Atrophy (SMA Type 1).

The diagnosis is shared by Little Mix star Jesy’s twins, Ocean Jade and Story Monroe, who were identified to have the condition at 18 months old, with doctors explaining they could be wheelchair bound, and require round-the-clock care. 

Sophia, who uses a motorised wheelchair, appeared on the show to show to offer up positive support to Jesy, 34, admitting that she thinks using the wheelchair is ‘fun’.

Her parents opened up on the moment they were first told about Sophia’s condition, with doctors telling the couple to not expect her to live long after birth. 

As mum Victoria fought back tears, dad Gee said: ‘[Watching Jesy] brought a lot of repressed memories when of Sophia was diagnosed. 

‘I remember being at Great Portland Street, we were coming out of the hospital, and the world had stopped – we were told that our child was not going to live past two. 

‘There was no discussions about walking, or sitting it was just “this is it, love her, take her home but don’t get used to her” – and at that time, the world stopped. 

‘Those memories came flooding back, and pretty much every time I see new families diagnosed with SMA, it’s just reliving that moment.’ 

Victoria added: ‘I take my hat off to Jesy completely, I don’t know if I could’ve done it so publicly and so bravely, and its very new for her, we’ve had ten years to get used to things. 

‘It was amazing, but awful at the same time. You don’t want anyone else to have to go through it. 

‘SMA is a spectrum, Sophia is somewhere on that spectrum and there are children who require ventilation and help feeding – not everyone is the same. 

‘It’s life changing, but it’s not life limiting – she’s living life, a fantastic life, just differently and perhaps not how we expected and let’s be honest, not how we wished. 

‘We wouldn’t want this for her, I want her to be able to do everything she possibly can but, she is doing fantastic things, she’s doing amazingly, and it’s not stopping her.’ 

Ben went on to heap praise on Sophia, as a ‘charming, bright’ young girl, that was ‘still living her best life’ despite the ‘restrictions’ of her diagnosis.  

Sharing a positive and hopeful message to Jesy, Sophia chimed in: ‘What I wanted to say was that being in a wheelchair is not the worst thing, it’s actually quite fun.

‘You don’t get tired, and you get to do a lot more races and most likely win, and you can give your friends rides on the back!’ 

Sophia, who has defied the odds by living to ten with SMA, went on to let Ben ride on the back of her specialised wheelchair, taking him around the studio as she laughed and smiled with Ben, 51. 

‘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.  

It comes after Jesy opened up on the heartbreaking diagnosis of her twins Ocean and Story live on air on This Morning, breaking down in tears. 

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.’ 

Last week, Jesy shared an update with fans and revealed she is fighting for SMA1 screening at birth after her twin daughters could have avoided severe muscular disease with early treatment.

The genetic neuromuscular disease causes progressive muscle weakness and wasting due to motor neuron loss.

Jesy was tearful as she explained that the condition ‘affects every muscle in the body down to legs, arms, breathing and swallowing’, adding that ‘essentially what it does over time is it kills the muscles in the body’.

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.

This Morning airs weekdays from 10am on ITV1 and ITVX.