FORMER Little Mix star Jesy Nelson has told of how “proud” she feels that screenings for spinal muscular atrophy (SMA) will begin earlier than planned.
The singer has campaigned for all newborn babies to be screened for SMA after her twins, Ocean Jade and Story Monroe, were diagnosed with the rare condition which causes progressive muscle wastage.
Jesy has previously said it is unlikely they will ever walk and tragically may not live to the age of two.
The 34-year-old launched a petition for more health checks for babies, with it reaching almost 150,000 signatures.
Now, in a letter addressed to Jesy and Giles Lomax, the chief executive of the charity SMA UK, Health Secretary Wes Streeting confirmed that screenings will be rolled out earlier than planned.
Now, they will begin as part of in-screening evaluations (ISE) from October 2026 instead of January 2027.
It is believed that more than 400,000 newborns will benefit from the move.
But 163,000 newborns will remain untested so they can act as a control group to compare outcomes.
This has been branded by experts as “unethical” and means that an estimated 11 babies a year will still be diagnosed too late.
ISE is used to test proposed new screening programmes or changes to existing programmes before being adopted nationally.
Mr Streeting said: “My officials are still working through the challenges related to extending the ISE to the whole of England and I will keep you both updated of progress in this area.
“As you know, I’d like to see a full rollout. Scottish officials are working with the UK NSC to ensure that findings from this pilot can be shared, too.”
It comes after Jesy met with Mr Streeting earlier this year to speak about the life-changing impact early detection of the condition could have had on her twins.
The UK National Screening Committee had refused to roll out the £5 SMA blood test out on the NHS since 2018.
But, Jesy and SMA UK demanded change after she spoke out about the late diagnosis of her twins.
Jesy, who recently became a patron of SMA UK, celebrated the news in a post on Instagram stories, claiming it was a “major milestone”.
She said: “ISE have announced to start screening for SMA in England will now begin in October 2026.
“I am so proud, as this is a major milestone for the SMA Community.”
SMA is a rare but devastating degenerative condition, affecting around one in 14,000 babies, with the majority being type 1 which affects babies less than 6 months old.
Common symptoms include muscle weakness, such as floppy or weak arms and legs, movement problems, problems with breathing or swallowing, tremors and bone and joint issues that can lead to spine curvature.
Most types of SMA are caused by inherited faulty genes and crucially can be picked up through a heel prick blood test.
Tests, including genetic blood tests, are available before, during and after pregnancy but historically have only been offered to at-risk parents and children.
Early treatment can help prevent some of the most devastating consequences of the condition.
Jesy’s twins have since had a one-off infusion that puts a missing gene back into their body to stop other muscles from dying.
However, they will not be able to regain any muscles that have already died.
In a statement Mr Lomax also said: “Following years of campaigning we are delighted to see the formal announcement that screening for SMA will start in six months’ time in England.
“This milestone will change the lives of so many diagnosed through the heel prick test.
“We will continue to work hard to ensure this SMA is rolled out to other parts of England as well as the home nations, no baby should be left behind based on where they live.”
Spinal Muscular Atrophy: Signs and symptoms
Spinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.
This causes an individual to lose the ability to walk, eat and breathe.
There are four types of SMA – which are based on age.
- Type 1 is diagnosed within the first six months of life and is usually fatal.
- Type 2 is diagnosed after six months of age.
- Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
- Type 4 is the rarest form of SMA and usually only surfaces in adulthood.
What are the symptoms?
The symptoms of SMA will depend on which type of condition you have.
But the following are the most common symptoms:
• Floppy or weak arms and legs
• Movement problems – such as difficulty sitting up, crawling or walking
• Twitching or shaking muscles
• Bone and joint problems – such as an unusually curved spine
• Swallowing problems
• Breathing difficulties
However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.
How common is it?
The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA.
Usually, the parent would not have the condition themselves – they would only act as a carrier.
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy.
It affects around 1 in 11,000 babies.
