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Hi, Our grandson has same combo. He is 11 now and has also shown no symptoms. Had a CT scan beginning of year which showed absolutely normal lungs. No damage. Has never used pulmozyne but does his breathing exercises. FEV1 consistently above 100%. Thus far any respiratory viruses have been...

Hi there, My grandson has the same mutation combination as your little girl and 7 years ago we were in the same situation you are in now. I am usually a passive member of this form, however I know how frustrating it is to have so little information about this rare gene. As a result I felt...