Raising awareness for SMA - Sue Webber
Over a year ago I wrote about little Nathaniel Phillips, the five-year-old boy who suffers from spinal muscular atrophy (SMA), an incurable genetic condition affecting spinal motor nerves which, unless caught early, results in progressive muscle wasting and weakness.
Nathaniel and his mum Bernadette visited Holyrood to raise awareness of the campaign, calling for testing at birth and since then I’ve worked with the SNP’s Maryhill MSP Bob Doris to persuade the Scottish Government to introduce SMA screening.
To my delight and astonishment Bob has been told in a written answer from health secretary Neil Gray that an extensive study will start in early 2026 in which screening will be available for the next two years for all babies born in Scotland.
Around one in 10,000 babies will be born with the condition, so while the numbers are small ─ perhaps no more than five in Scotland last year ─ those with the condition who are untreated can suffer devastating disabilities. Nathaniel needs a ventilator to breathe.
All that’s needed is to have SMA added to the list of nine conditions already screened through a blood spot test and the Scottish study will help inform the UK National Screening Committee and potentially help 60 babies born with the condition every year in England and Wales.
It goes to show what can be achieved when politicians work together and although Bob and I were two of only three MSPs to meet Bernadette and Nathaniel last year, we have achieved something special. Well done, Bob.