JESY Nelson has admitted the SMA update is “bittersweet” as she insisted “there’s still so much more to do” as she continues her campaign.
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.
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.
Jesy took to Instagram with a new clip as she explained that it was a “proud moment” but said there was still a long way to go.
She said: “Hi guys, I just wanted to come on here to share some information I’ve heard over the last couple of days.
“As you know I’ve been campaigning to try and get SMA as part of the newborn screening here in England.
“My girls were diagnosed with SMA type 1 – unfortunately they weren’t tested at birth because it weren’t here in England.
“But they have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible.
“I know it’s a really big moment for the SMA community because this has been going on for years, trying to get this passed.
“It’s a real proud moment but at the same time it’s a bit bittersweet because they are only doing it in certain areas of England.
“So if you do not live in that certain postcode of England then your baby won’t be tested for SMA, which is really sad and it’s essentially postcode lottery for your baby which should not be the case, all babies lives matter.
“As amazing as it is, there is a long way to go in terms of that, so I’m going to keep pushing and trying as much as possible to get this in all areas in England.
“Also, the petition that all of you signed and get the 100,000 signatures, is now going to be debated in parliament is amazing.
“That’s all down to you guys, you are all incredible.
“I just want to say that I am so appreciative of all the support and love and messages.”
She wrote in the caption: “I wanted to update you all on something very close to my heart…
“SMA screening is now set to start earlier, from October 2026 instead of 2027 which is such a huge step forward for early diagnosis and the SMA community.
“It’ll be rolled out in selected areas first, so while this is real progress there’s still so much more to do. We need to keep pushing to make sure every baby has the opportunity to have this heel prick test at birth.
“Also… the petition YOU all supported has reached the stage for a parliamentary debate which means even more awareness where it matters most.
“I truly am grateful for all your support not only for me and my girls, but for everyone in the SMA community… We’re getting closer. Love you all.”
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.
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.
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.