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?"
Esta historia es de la edición June 14, 2024 de Daily Mirror UK.
Comience su prueba gratuita de Magzter GOLD de 7 días para acceder a miles de historias premium seleccionadas y a más de 9,000 revistas y periódicos.
Ya eres suscriptor ? Conectar
Esta historia es de la edición June 14, 2024 de Daily Mirror UK.
Comience su prueba gratuita de Magzter GOLD de 7 días para acceder a miles de historias premium seleccionadas y a más de 9,000 revistas y periódicos.
Ya eres suscriptor? Conectar
Watch the birdie
Twitchers thrilled at first sighting since 80s
Checking up on check-ups
Watchdog calls for review of NHS health MOTS
BRAVERU WORLD
United stars are bracing themselves for a huge shake-up under Amorim and De Ligt admits that they must be ready
MERINO: WE MUST BE SPECIAL
Mikel: We must forget recent blip, stay positive & win every gave
CHANGES.OR DIE
Gusto says having a big Chelsea squad isn't a problem...it's vital if the Blues want to build a winning team
HIT THE WRIGHT WAIT NOTE
Boss jeered as Oz player but hopes Hull fans will soon sing his praises
GP didn't tell family of low' teen's suicide plan TRAGEDY
Anger over experts' double error
REFFING & BLINDING
Prem official is suspended for sweary Klopp rant film
told or Grenadian neighbour, left Red alert on pace of climate change
Stark report at Cop29 summit
Glowing old gracef
Linda's joy at non-surgical facelift result