21/01/2026
'Why aren’t we testing every baby for SMA?'
When Jesy Nelson’s twin girls were born, no one told her about spinal muscular atrophy (SMA) – a rare genetic disease that slowly stole their ability to move.
By the time they were diagnosed at 6 months, it was likely too late for life-saving treatment to have its full effect, and she's been told they probably won't ever walk.
Now Jesy’s using her platform to campaign, calling for SMA to be included in the standard newborn heel prick test in England when babies are 5 days old.
If SMA is treated at or soon after birth, the condition can be largely prevented.
The first-time mum has now met with Health Secretary Wes Streeting to demand change, pushing for ALL newborns to be screened from birth.
Right now, an NHS evaluation is underway, but it won’t conclude until 2028.
Meanwhile, Scotland is moving faster. From early 2026, all newborn babies in Scotland will be offered screening for SMA through the existing heel prick test, making it the first UK nation to do so, aiming to detect the devastating condition early for prompt treatment. This will be done as a two-year pilot study to collect evidence on how effective the screening is and how best to implement it.
Jesy’s fight is personal. But her mission could protect every baby born in the future.
Read here: https://bit.ly/49Jll9N
📷 ITV
