Jesy Nelson ‘right to challenge’ twins’ diagnosis process - UK health secretary

By Ella Pickover, Press Association Health Correspondent

The UK health secretary has said Jesy Nelson was “right” to challenge the screening process for spinal muscular atrophy (SMA) after her twins were diagnosed with the rare genetic condition.

Wes Streeting said that Nelson was “right to challenge and criticise how long it takes to get a diagnosis”.

The Cabinet minister said he was “determined to look not just at screening for SMA, but to make much better use of genomic medicine”.

The former Little Mix star shared the news that her babies Ocean Jade and Story Monroe Nelson-Foster were diagnosed with SMA1 on Sunday.

Newborn screening for SMA is not available in the UK, but Scotland has announced it will screen babies from the spring.

The UK National Screening Committee does not recommend screening but has commissioned work to reassess this due to developments in treatment.

Mr Streeting told ITV News: “My heart goes out to to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable, not least because there will be other parents who are going through what she is going through, who I think will relate very heavily to what she said.

“She’s challenged us to go further on screening, and she is right to do so.

“There are now more treatments available for spinal muscular atrophy than ever before, and as I know from a friend whose daughter has been in this situation, we are seeing children with SMA now not just living and surviving but thriving.

“So there’s a lot of hope there.

“Where I think Jesy Nelson is right to challenge and criticise is how long it takes to get a diagnosis, and there is screening available, and that’s why I’m determined to look not just at screening for SMA, but to make much better use of genomic medicine, because, as I’ve said before, we’ve got some of the best genomic science in this country, but we’re not as good as others when it comes to applying it, and that’s one of the changes you’ll see in the coming years under our leadership.”

Nelson described the diagnosis in an Instagram video posted on Sunday.

“Long story short, after the most gruelling three/four months and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA type one,” she said.

The 34-year-old said it was “frustrating because there’s so many children that have been detected from birth, because they’ve had a heel prick from birth, and they’ve been detected that they have SMA1 and then they’ve had the treatment and then these children have been gone on to walk, they’ve gone on to live how a child should live”.

The singer said: “The majority of this can be prevented if it’s detected from birth and all it takes is a heel prick.

“It’s not in this country, there’s many countries where it is tested at birth with just a simple heel prick, and I don’t think anyone understands how much this can change your child’s life – it can literally save their legs, it can save so many parts of their body and essentially stop them from dying.”

SMA causes muscles to weaken and waste over time.

It can affect the ability to walk and crawl and can also impact breathing and swallowing.

We’re deeply moved and saddened by Jesy Nelson’s news that her twin daughters have been diagnosed with Type 1 SMA.

SMA UK is here for everyone affected by SMA, No family should face the heartbreak of a preventable delay in diagnosis.

Full statement here: https://t.co/AXsaCcuClv pic.twitter.com/O0ubDWp6TS

— Spinal Muscular Atrophy UK (@SMA_UK_) January 5, 2026

An estimated one in 10,000 babies worldwide are born with a type of SMA.

SMA Type 1 (SMA1) is the most common and severe form of the condition.

Without treatment, which focuses on the altered genes that cause SMA, babies tend to live less than two years.

Symptoms include babies feeling floppy, being unable to raise their heads properly, not sitting and having difficulty moving, breathing and swallowing.

Muscular Dystrophy UK has called for all babies to be screened at birth.