'Dexter is a wonderful, smiley, happy boy and we just want him to have as normal a life as possible'

THE parents of little Dexter Newton face the nightmare scenario of missing out on life-saving medication that could tackle his cystic fibrosis.

- Chris Riches

The seven-month-old baby's family are pleading for health chiefs to reverse draft guidance that said the wonder drugs are too costly for new and future patients.

His father Dan said: "Dexter is smiley and happy and a wonderful boy and we just want him to have as normal a life as possible.

"Dexter could live a life unlimited by his genetic condition. He didn't ask for this." Before 2019, there was no effective CF treatment on the NHS.

But in October that year, after a campaign by the Daily Express, breakthrough drugs by US giant

Vertex were made available to UK patients. Its newer CF wonder pill Kaftrio was later added.

The group of medications have transformed patients' lives. But a month ago, NHS treatment approval group the National Institute for Health and Care Excellence gave initial draft guidance that Vertex's drugs are too costly for future patients.

This means babies under one could be denied Vertex drugs when they are medically ready for them. Nice's final decision on the matter is expected in the new year.

So, for now, any baby CF sufferers - and any sufferers not yet born face missing out on Kaftrio, hailed as "almost cure" for the a cruel condition.

Yesterday, Dan told us that as Nice now ponders its final decision, he hopes officials realise how vital these drugs really are.

The construction worker, of Selby, North Yorks, said: "We were shocked and gutted when we heard Nice's initial decision, but there's a long way to go yet and we hope they see sense.