Sarah's four-year-old daughter Lucy has the condition and her family believed she would be eligible for the drug Kaftrio at the age of six.
Sarah, who lives in Wingham, Kent, said: "I am utterly heartbroken right now, I have always been scared and worried about my Lucy’s future due to her CF, but now I am petrified. David Ramsden, CEO of Cystic Fibrosis Trust said it was “disappointing news” which “creates uncertainty” for those not yet on treatment.
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