Jesy Nelson campaigns for muscle disease test for babies

Singer Jesy Nelson has pledged to "fight as much as I can" to get all babies tested for a rare muscle disease at birth, after revealing that her twin daughters had been diagnosed with the condition.

At the weekend, the former Little Mix star said her seven-month-old girls have Spinal Muscular Atrophy (SMA) and will "probably never walk".

She said she would campaign for SMA to be added to an NHS blood test that is normally carried out at five days old, and currently tests for 10 other conditions.

"I am starting a petition to try and get the SMA on the newborn screening heel group testing from birth," Nelson, 34, said on her Instagram story.

"And I just need you to know that I am so determined to make this happen, so I'm going to fight as much as I can to make this part of the newborn screening.

"It's currently under review, so I will keep you updated with that one."

The pop star also said she had been "overwhelmed with the amount of support" she had received since posting her first video on the subject on Sunday.

"Thank you genuinely so, so much from the bottom of my heart for just the outpour of support and beautiful messages for me and just so many other families that are dealing with this horrible diagnosis," she said.

In Sunday's video, Nelson said the diagnosis had come after "the most gruelling three, four months and endless appointments", and described SMA as the "most severe muscular disease".

"It does affect every muscle in the body, down to legs, arms, breathing, swallowing," she said.

She explained that her daughters Ocean Jade and Story Monroe Nelson-Foster had not been showing as much movement in their legs as they should be, and were struggling to feed properly.

"Essentially, what it [SMA] does is, over time, it kills the muscles to the body, and if it's not treated in time, your baby's life expectancy will not make it past the age of two."

She added that they have had treatment, which she was "so grateful for".

However, she said doctors had told her that her daughters were "probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled".

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.