1 baby a week left paralysed.... for want of a £5 test given in poorer nations and even war-torn Ukraine

AROUND one baby a week is paralysed by a devastating muscle-wasting disease due to delays in rolling out a simple £5 blood check at birth.

- MARTIN BAGOT

Families of infants paralysed by spinal muscular atrophy demand the Government adds the condition to ones tested for in the heel prick test, done on babies at five days.

Experts have called the five-year delay by the Government's National Screening Committee a national medical emergency. Dozens of countries, including the US, Australia, Japan, Russia, most of the EU and even war-torn Ukraine have introduced the simple test.

Gene therapies can now prevent newborns with SMA suffering paralysis but only if given at birth before irreversible damage has occurred.

Since 2019 around 250 babies have been disabled by the genetic condition known as floppy baby syndrome.

Meanwhile the NSC, which advises government, is dithering over whether to use the test.

One such sufferer is Ollie Williams, now three, diagnosed at three months.

He needs a feeding tube into his stomach and oxygen machine at night. His mum Amy said: "Every child should be tested for this and it's devastating this hasn't happened. If a country like Ukraine in the middle of a war can add it to their heel prick test as well as countries that are not as wealthy as the UK, then why can't we?"