So for Christmas, we joined Carlie, her mother Debbie O’Hare, husband Chris, 29, and two-year-old son Jude at their home in Sittingbourne, Kent. But after the fizz was popped and crackers pulled, one present was left under the tree – her Symkevi. Carlie fought alongside the Daily Express for US firm Vertex’s CF drugs Symkevi and Orkambi to be available free on the NHS.
She so dazzled Health Secretary Matt Hancock, she was the first person he rang two months ago to reveal a deal was agreed.
Donning her festive jumper, Carlie said: “It still does not feel real to be sitting here by my Christmas tree with this in my hand.
“Fighting for something you fear you may never actually get to hold is strange. It all feels like a dream, and to get it at Christmas – like so many other CF-ers – in recent days has made it extra special.”
Carlie was only diagnosed aged nine after mum Debbie went to the library to look up her symptoms.
At school, she kept her condition secret, unaware it was life-limiting until a biology lesson left her in tears.
She has endured frequent trips to hospital for intravenous antibiotics and her fears were magnified when she had Jude.
Carlie said: “When he was only five weeks old I had a bad infection and spent two weeks in hospital, away from Jude and cried every day.
“But he made me sit up and think I had to fight for my health. I didn’t want him to be the boy at school whose mum died.”
Debbie, 56, told us: “Twenty years ago when Carlie was diagnosed she was given no future. We all feared she would not live beyond 30. The age 30 was repeatedly mentioned. By finally getting this medication, we feel her life has now been rewritten for the better.”
Last month the Daily Express launched our new CF crusade – for a swift NHS deal for Vertex’s most advanced drug to date – Trikafta.
And we are delighted that Carlie has agreed to continue fighting alongside us, to secure her next 30 years and beyond.