Last Christmas parents Naomi, 36, and Dan Newton, 37, told us of their fears that Dexter could miss out on lifesaving pills due to the shattering NICE draft guidance at the time which threatened to stop new patients starting on them.
But as the row about the decision rumbled on Dexter was able to start on Vertex's basic CF drug Orkambi and already his health has soared.
Now construction worker Dan, of Selby, North Yorkshire, has told us of his excitement that in a year Dexter will now be on Kaftrio and have an even better chance at living a life unlimited by the cruel genetic disease.
Dan explained: “As we awaited the final news on these drugs we were able to get Dexter on Orkambi in May and in just a few weeks we have seen a huge change in his health.
“He usually has to take lots of an enzyme supplement called Creon to help his CF-affected pancreas get processed the nutrients in his food – but since he's been on Orkambi he's only needed half his Creon!
“Now we know Kaftrio is a much more effective drug we can't wait to see him start on that when he's aged two, which is the minimum age you have to be in the UJK to start it.
“Dexter is doing really well at the moment but we are now so excited for him to start on Kaftrio – as we are for all those who could have been denied the drug by the original NICE draft recommendation.
“Dexter will now have the chance of a full life not restricted by this genetic disease. It's amazing.”
Dan and wife Naomi, who also have three-year-old son Parker who does not have CF, were aware of the cruel condition before Dan's half-sister Millie, aged 22, also has it.
Luckily so far Dexter has been growing strong and healthy and apart from a brief bronchiolitis needing antibiotics, he has avoided any nasty lung bugs.
Dan added: “We've been really lucky and the local CF team are great.
“But there are 10 percent of sufferers who are still unable to take any treatments due to having such rare CF genes and we will not stop fighting until they are all on lifesaving modulators too.”