Jesy Nelson will ‘shout to the rooftops’ about baby muscle disease campaign

Singer Jesy Nelson has vowed to “shout it from the rooftops” to campaign for all babies to be tested at birth for a rare muscle disease.

The former Little Mix star recently discovered their seven-month-old daughter has Spinal Muscular Atrophy (SMA) and will “probably never walk”, but the condition is not included in screening for newborn babies.

“That’s what’s frustrating.” he told ITV This Morning on Wednesday. “If that’s the card I’m always going to be dealt and there’s nothing I can do about it, then it’s almost easier to accept.

“But when you know there’s something that can be done about it and it’s going to change your child’s life, that’s the part I can’t accept.”

The singer became emotional as she told presenters Cat Deeley and Ben Shephard that her life has “completely changed” since her diagnosis.

Nelson, 34, wanted SMA to be part of the NHS blood test, which is normally done at five days old and now tests for 10 other conditions.

Speaking days after posting a video announcing her twins’ condition on social media, Nelson said: “I have this platform and I almost feel like I have a duty of care to raise awareness about this.

“And there’s a little part of me that, I don’t know if it’s crazy to say this, thinks I can’t just keep it to myself and potentially save a child’s life.”

Nelson added that she had to quickly learn how to care for her daughters, Ocean Jade and Story Monroe Nelson-Foster.

“There’s so much to deal with while you’re also trying to deal with this terrible thing that just happened.”

The singer said doing so while also trying to just be their mom is “the part I still struggle with,” and reassured Deeley when she got emotional.

“I’m not going to lie. The part that really gets me is this: I just want to be their mom, I don’t want to be a nurse.

“So it’s hard, but yes, if this is caught from birth, life changes, I want to repeat that.”

She added that watching videos of her daughters again and now being able to see signs that their legs were moving less and less in the first weeks “made me very sad.”

“That’s how fast it is. That’s why it’s so important and vital to get treatment from birth and it’s detected from birth,” he said.

He explained that the girls now receive treatment in the form of a one-time infusion.

“It actually puts the gene they don’t have back into their bodies. It prevents the muscles that are still working from dying.

“But you can’t bring back what’s gone. So if you catch it early [it’s better]. Now everything will depend on a constant state of physiotherapy.”

He continued: “We were told they’ll probably never walk. They’ll probably never regain their neck strength. They’ll be wheelchair-bound.

“But there are so many stories where parents are told this and their children do incredible things, so I believe you need to implement this.

“They’re still smiling. They’re still happy. They have each other, and that’s the biggest thing I’m grateful for, because they can do it on their own, but they’re twins and they’re going through it together, and I think that’s beautiful.”

“So all I can do is be there for them, give them positive energy and do my best to continue physiotherapy.”

On Tuesday, Health Minister Wes Streeting told ITV News that Nelson had “the right to question and criticize how long it took to receive a diagnosis”.

He said he was “committed not only to SMA screening, but also to making much better use of genomic medicine.”

in 2021 A life-changing gene therapy drug The medicine, called Zolgensma, has been approved by the NHS to treat babies with the disease.

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

Scotland will begin routinely screening babies for SMA from spring and the National Screening Committee is currently reviewing whether this method should be rolled out across the UK.

Nelson has added his voice to a campaign organized by SMA UK to introduce routine screening into the NHS newborn blood spot test, which currently investigates conditions such as cystic fibrosis, sickle cell disease and a range of inherited metabolic diseases but does not include SMA.

An NHS spokesman said three new treatments for SMA have been introduced since 2019 and have helped hundreds of children.

“The UK National Screening Committee is investigating whether the NHS should introduce routine screening to detect this condition through a heel prick blood test early in life, and the NHS supports further evaluation to inform the Committee’s decision.

“The Generation Study is also assessing whether genomic sequencing could be adopted more widely as part of standard newborn screening on the NHS, including SMA testing.”