Jesy Nelson struggled to hold back tears as she spoke about the first red-flag signs she spotted in her twin babies after being told they may never be able to walk. The former Little Mix singer and first-time mum appeared on today's (Jan 7) episode of ITV's This Morning alongside presenters Ben Shepard and Cat Deely to discuss her twins' rare diagnosis.

Last week, the singer uploaded an emotional video revealing that her eight-month-old twins have been diagnosed with Spinal Muscular Atrophy (SMA), which is a progressive muscle-wasting disease. Hoping to raise more awareness of the condition, Jesy spoke with Ben and Cat about possible treatment and her campaign for change to help others.

Since uploading the emotional video, Jesy says she's been overwhelmed by the "amazing" response she's had. The mum added how she wants it to get "as much reach as possible to raise awareness" and says "I’m going to shout to the roof tops about this".

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Explaining as well why she decided to post the video, she said: "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."

In the video, she reveals her eight-month-old twin babies, who were both born prematurely, may not ever walk due to SMA. The condition can be tested with a heel prick test at birth - something that is not currently routine on the NHS.

Jesy said: "That’s why I wanted to make that video. 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 Neonatal Intensive Care Unit (NICU), ‘that they won't reach the same milestones, take them as they are, because they were premature'."

Jesy went on to share the first few red-flag signs she spotted. "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." She also recalled noticing that her twin girls weren't moving their legs much.

The singer vented her frustrations as she also recalled healthcare visitors coming round and claiming they were telling her that her babies "are fine and healthy and doing really well". She added: "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’. Every day I started to notice movements less and less and less.

"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."

According to the NHS, 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." Spinal muscular atrophy (SMA) affects everyone differently, but symptoms can include:

• muscle weakness – such as floppy or weak arms and legs


• movement problems – such as difficulty sitting up, crawling or walking


• problems with breathing or swallowing


• twitching or shaking muscles (tremors)


• bone and joint problems – such as an unusually curved spine (scoliosis)

The NHS says: "These symptoms are most often noticed in babies and toddlers, but they can also start in teenagers and adults. SMA does not affect intelligence or cause learning disabilities."

Updating Ben and Cat on her current situation with the twins, Jesy said: “They’ve had treatment now thank God, that that is a one off infusion. And that essentially puts the gene back in their body that they don’t have. It stops any of the muscles that are still working from dying. But any that have gone you can’t regain those back.

"So now it’ll be a case of constant physio… we’ve been told they will probably never walk, probably never regain their neck strength, they are going to be in wheelchairs… but listen, there have been so many stories where parents have been told this and their children have gone on to do incredible things, so I believe you’ve just got to manifest this.

"They are still smiling, they are still happy and they have each other and that’s the thing I’m so grateful for. They are going through this together and I think this is beautiful. All I can do is try my best to be there for them, give them positive energy, and keep doing physio… my whole life has completely changed.

"My house looks like a hospital. My hallway is filled with medical stuff. It’s crazy how you can go from one extreme to the next. Story [one of her twins] is on a breathing machine at night because she’s not strong enough to breathe by herself, they have feeding tubes down their nose, and I’ve literally had to learn all this in the space of a few days since getting their diagnosis. It’s so much to deal with."

Getting emotional, Jesy admitted: "I’m still struggling with it, I’m not going to lie… 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 change."

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