I would have been selfish not to share twins' muscle disease diagnosis, Jesy Nelson says

1 day ago

Ian YoungsCulture reporter

Ken McKay/ITV/Shutterstock

Singer Jesy Nelson has pledged to "shout from the rooftops" to campaign for all babies to get tested for a rare muscle disease at birth.

The former Little Mix star recently discovered her seven-month-old daughters have Spinal Muscular Atrophy (SMA) and will "probably never walk", but the condition isn't included in screening for newborn babies.

"That's what's frustrating," she told ITV's This Morning on Wednesday. "If this was the card 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.

"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 that I cannot accept."

The singer became emotional as she told presenters Cat Deeley and Ben Shephard her life had "completely changed" since the diagnosis.

Nelson, 34, has called for SMA to be part of an NHS blood test that is normally carried out at five days old, and currently tests for 10 other conditions.

Speaking days after she posted a video on social media announcing her twins' condition, Nelson said: "I have this platform, and I almost feel like I've got a duty of care to raise awareness about it.

"And a little part of me feels, and I don't know if this is even crazy to say this, I feel selfish to keep this to myself and not potentially save a child's life."

Nelson added she has had to rapidly learn how to look after her daughters Ocean Jade and Story Monroe Nelson-Foster.

"It's just so much to deal with whilst you're also trying to deal with this horrendous thing that's just happened."

The singer said doing that while also simply trying to be their mum was "the part that I'm still struggling with", and was comforted by Deeley as she became emotional.

"I won't lie. The part that really gets me, is I just want to be their mum, I don't want to be a nurse.

"So it's hard, but, yeah, I just want to reiterate that if this is caught [diagnosed] from birth, it's just life changing."

'They are still smiling'

She added that it "makes me so sad" to watch back videos of her girls and now be able to spot the signs that their legs were gradually moving less during their first weeks.

"That's how quick it is. And that is why it is so important and vital to get treatment from birth, and it is detected from birth," she said.

The girls have now had treatment in the form of a one-off infusion, she explained.

"It 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 them. That's why if you catch it early [it's better]. Now it will just be down to a case of constant physio."

She continued: "We've been told that they will probably never walk. They'll probably never regain their neck strength. They are going to be in wheelchairs.

"But 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 that you've just got to manifest this into existence.

"They are still smiling. They're still happy. They have each other, and that's 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, and I think it's beautiful.

"So all I can do is just try my best to be there for them, give them positive energy, keep doing physio."

On Tuesday, Health Secretary Wes Streeting told ITV News that Nelson was "right to challenge and criticise how long it takes to get a diagnosis".

He said he was "determined to look not just at screening for SMA, but to make much better use of genomic medicine".

In 2021, a life-changing gene therapy drug called Zolgensma was approved by the NHS to treat babies with the disease.

According to the charity SMA UK, the drug delivers a healthy copy of the affected gene to the body, but timing is critical because irreversible damage may have already occurred in the nervous system.

Scotland will start routinely screening babies for SMA from the spring, and the National Screening Committee is currently reviewing whether to introduce it across the UK.

Nelson added her voice to a campiagn by SMA UK to introduce routine screening to the NHS newborn blood spot test, which currently looks for conditions including cystic fibrosis, sickle cell disease and a range of inherited metabolic diseases, but not SMA.

An NHS spokesperson said three new treatments for SMA had been rolled out since 2019, helping hundreds of children.

"The UK National Screening Committee is looking at whether the NHS should introduce routine screening to identify the condition in early life via a heel prick blood test – and the NHS is supporting further evaluation to inform the Committee's decision.

"The Generation Study is also evaluating whether genomic sequencing could be adopted more widely as part of standard newborn screening in the NHS, including testing for SMA."