Jesy Nelson provides health update after sharing twin daughters' heartbreaking condition: 'Could have prevented it'

Following the heartbreaking news, Ms Nelson has decided to campaign for change to help others with the progressive muscle-wasting diagnosis and potentially help parents to spot signs and symptoms before it becomes too late.

Appearing on the ITV show, she told presenters Cat Deeley and Ben Shephard: "I'm actually overwhelmed.

"I wanted it to get as much reach as possible to raise awareness about it, and I actually can’t believe how amazing the response has been.

"Just people watching to learn, and other families that are dealing with this diagnosis… It's a lot, but it's what I wanted it to do."

Sharing her motivations for posting the candid and emotional video on Instagram, she reflected: "If I had seen someone else's video, maybe - just maybe - I could have prevented this from happening - if I had seen a video and caught it early enough.

"I could’ve done this privately, but I have this platform, and I feel a duty of care to raise awareness about it.

"And a part of me feels selfish to keep this to myself and not potentially save a child's life."

SMA can be tested with a heel prick test at birth - something that is not currently routine on the NHS, which Ms Nelson is hoping to change.

"That's why I wanted to make that video," she explained. "I knew and saw all of the signs before I even knew what SMA was, but because it was hammered home to me to not compare my baby after leaving NICU, that 'they won't reach the same milestones, take them as they are, because they were premature...'

"When I took them home, I was focused on checking their breathing, checking their temperature, I wasn't focused on checking if their legs were still moving.

"But I remember laying them down on their mat and thinking, 'Isn’t their belly an unusual shape?' and they breathe from their belly, and we were like, 'Well, that’s just because they are premature,' and that's what’s frustrating."

The 34-year-old singer continued: "For me, if this was the cards that I was always going to get dealt and there was nothing I could do about it, then it’s almost easier to accept, but when you know that there is something that can be done about it, and it is life changing to your child, that’s the part I cannot accept. And that is why I'm going to shout to the rooftops about this."

The determined mother added: "It's alarming when you've got healthcare visitors coming around telling you they are fine and healthy and doing really well, and it took for my mum to say, 'They don't move their legs how they should be moving.'

"My mum is a worrier, and at the time, I thought that was just mum being mum, but then I thought, 'actually, they don't move them a lot.'

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"And every day I started to notice movements less and less and less… And when I watch back videos of them now from when I came home from NICU to now, they are moving their legs, and then week two, week three, it gets less and less, and after a month, it just stops.

"And that’s how quick it is, and that is why it’s so important and vital to get treatment from birth."

After sharing what her new normal looks like, in which she compared her house to a hospital, Ms Nelson became emotional.

"I'm still struggling with it, I'm not going to lie," she admitted heartbreakingly.

"I just want to be their mum, I don’t want to be a nurse. It’s hard. I just want to reiterate that if this is caught from birth, it's just life-changing.

"I don't think I'll ever get over it or accept it, but all I can do is try and do my best and try and make a change.”