Jesy Nelson meets with Health Secretary Wes Streeting as she continues SMA campaign

Former Little Mix singer Jesy Nelson made an appearance on ITV/STV Daytime show This Morning earlier this month, following the news that her eight-month-old twins Ocean Jade and Story Monroe have been diagnosed with Spinal Muscular Atrophy (SMA).

Following her first appearance, she returned to the show this week, where she met with Health Secretary Wes Streeting, who was brought to tears as they discussed her campaign to have all newborn babies screened for the genetic condition SMA.

While on the programme, Jesy explained to Wes: "We need to change the way babies are screened in the UK. Right now, the system isn’t working. (The last few weeks) have been overwhelming. So many families have reached out and told me their stories and have been screaming and shouting about this for years and it’s taken for me to come along, who has a few million followers, and now it’s being taken seriously. So why now?"

Wes replied to Jesy saying: "That’s a fair question and my inbox has been full of families in the same position. People are so grateful to you. There is some good news. In terms of screening, there is a live evaluation going on now, that will give us, I hope, the evidence based to bring forward what you're calling for.

"That evaluation, will involve around two thirds of babies, is not due to report until around Jan 2028, so two years from now. Firstly, can we make sure the evaluation involves all babies during the trial period? And secondly, can we bring it forward?"

After the interview, Jesy, still alongside the Health Secretary, added: "Me and Wes have had a private conversation off camera - and if I’m honest, that’s the conversation I wanted on camera - because I actually thought that was more honest, open and raw.

"And even down to the little things when you were shown a video of two sisters with SMA type 1, with one in a wheelchair and one holding her hand running along with her, and I know that, that really impacted you… That’s how life-changing it can be. I feel so passionate about trying to raise awareness and getting this changed because I believe that no parent should ever have to go through this."

Getting emotional, Wes responded: "I found that video really hard to watch, because the outcomes for those two kids were so different…"

Watch the interview below

Jesy, who gave birth to her daughters at 31 weeks in May last year, took to social media earlier this month to share an emotional video, where she revealed Ocean and Story "will probably never walk", after being diagnosed with the progressive muscle-wasting disease.

Opening up about the support she's received since posting the video, 34-year-old Jesy told This Morning hosts Cat Deeley and Ben Shephard, in her first interview: “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.”

What is SMA?

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.

You can find out more information at SMA UK.

Is SMA tested on the NHS?

Although the NHS offers every newborn baby a heel prick test, looking for nine rare but serious conditions, the current test does not include a test for SMA.

NHS Scotland will be adding SMA to their newborn screening programme in an evaluative and research capacity in early 2026, but NHS England and NHS Northern Ireland currently does not offer the test.

With this in mind, Jesy is adamant to raise awareness of the condition, campaigning for the test to be available on the NHS. 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. And a part of me feels selfish to keep this to myself and not potentially save a child’s life.”

In a video posted to her Instagram page, Jesy has also informed fans she's going to set up a petition in an attempt to get SMA on the newborn screening heel prick testing from birth.

She told her followers: "Hi guys, I just wanted to come on here to do another video to basically say thank you, genuinely so so much from the bottom of my heart for just the outpour of support and beautiful messages for me and so many other families that are dealing with this horrible diagnosis.

“I just want to say thank you to everyone that shared it, to everyone that wants to learn about it, that’s taking the time to watch it and taking the time to send me beautiful messages.

“Thank you from me and the SMA community just appreciate it so much.

"Also I just wanted to let you guys know that I am starting a petition to try and get the SMA on the newborn screening heel prick testing from birth and I just need you to know that I am so determined to make this happen.

“So I am going to fight as much as I can to make this part of the newborn screening."

In her first interview on This Morning, Jesy also spoke about the warning signs her twins showed. She said: “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.

“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 roof tops about this.

“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’ 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 2, week 3 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.”

As previously announced in her social media video, Jesy's twins have now had the treatment, but she has revealed they may never be able to walk or regain their neck strength.

Speaking about Ocean and Story's current health, she added “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."

Jesy also spoke about what the future holds for her daughters, adding: "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.”

"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.”

Watch Jesy Nelson's first interview on This Morning:

If you have been affected by this story or would like further information about SMA, please visit SMA UK.