Jesy Nelson meets health secretary Wes Streeting to campaign for rare muscle disease test for all babies

Jesy Nelson has met with Wes Streeting, the health secretary, to petition him to roll out testing for spinal muscular atrophy (SMA) on the NHS for all babies. It comes as the music star previously revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, had been diagnosed with SMA.

Appearing on ITV’s This Morning, Nelson met Streeting face-to-face to discuss her twins’ diagnosis, telling him that “no parent should have to go through this” as she discussed caring for her twins and what their diagnosis would mean for them. The health secretary appeared to be visibly emotional while listening to her.

Earlier in the month, in a video on her Instagram account, Nelson said that it was her mother who first noticed the girls didn’t have as much movement in their legs. As they were born premature, Jesy was told by doctors not to compare her babies to other babies’ milestones, and at first, she wasn’t too concerned. However, when Nelson noticed they were also struggling to feed properly, worries set in, and she took her daughters to the GP for tests.

“After the most gruelling three, four months and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1,” Nelson said. She explained that, over time, the disease “kills the muscles [in] the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two”.

The girls have since received treatment, which she said she is “so grateful for”. However, doctors have told Nelson and her partner, Zion Foster, that their daughters are “probably never going to be able to walk” and “they probably will never regain their neck strength, so they will be disabled”.

Emma Vogelmann, a disability advocate who has severe type 2 SMA and shares her experiences on her website, The Wheelchair Activist, says that having a public figure like Jesy Nelson speaking out about SMA feels “particularly significant”.

“Spinal muscular atrophy is an extremely rare condition, and for most people it simply doesn’t exist in public consciousness,” says Vogelmann. “Having someone like Jesy speak openly about it immediately changes that. It means people are hearing the name of the condition, seeing it explained and understanding that it affects real families. That kind of visibility matters – not because it solves everything, but because silence and ignorance have very real consequences for disabled people.”

Babies in the UK currently undergo a blood test around day five to test for 10 rare but serious conditions, such as cystic fibrosis and sickle cell disease; however, SMA is only included in the test if a sibling has previously tested positive for it. Nelson is now campaigning for SMA to be routinely included in the heel prick test for all babies, as early detection and intervention can mean that life-changing treatment can be delivered.

“The difference between treatment at three months and treatment at six months can shape an entire life,” says Vogelmann. “Jesy mentioned it took months for her daughters to be diagnosed. Hearing about that delay was difficult – SMA is so uncommon that even many doctors don’t recognise it quickly. That gap in medical awareness means lost time, and with conditions like SMA, time matters.”

In a follow-up video on her Instagram stories, Nelson said that she is “starting a petition to try to get the SMA on the newborn screening heel prick testing from birth”.

She added: “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.”

Wes Streeting, the health secretary, has responded to Nelson’s comments, saying that she is “right to challenge and criticise how long it takes to get a diagnosis” and added that he is “determined to look not just at screening for SMA, but to make much better use of genomic medicine”.

Vogelmann agrees that early routine testing for SMA would be life-changing for babies born with the disease. “Early testing for SMA is especially important now because treatments exist – and time really is of the essence.” In 2021, a gene therapy drug was approved by the NHS to treat babies with the disease. It works by delivering a healthy copy of the affected gene to the body, but timing is critical because irreversible damage may have already occurred.

“Early diagnosis and early intervention can significantly improve quality of life and prevent the loss of abilities,” says Vogelmann. “While it’s not realistic to screen for every rare condition, SMA is one where delays caused by lack of awareness can shape an entire life. Faster diagnosis genuinely makes a difference.”

According to SMA UK, an estimated 47 babies were born with the condition in the UK in 2024. Vogelmann says: “It’s fantastic that Jesy is using her platform to raise awareness around SMA and early testing. I would never place an expectation on her to campaign – she’s clearly dealing with an enormous amount, personally – but awareness at that level can genuinely change lives. If this moment leads to faster diagnosis and earlier treatment for other children, that impact cannot be overstated.”

Images: Getty