Immobile Ciliary Disorder

My son was diagnosed with Immovile Ciliary Disorder today, basically it is a disorder like Cystic Fibrosis.  It has been a very hard day.  The worse effect will be lung transplants, the least is medication for his life , which he’s been on medication since he was born.  He sees the pulmonologist on Dec 5th then him and the ENT on the 20th decide exactly how the surgeries are going to go, he has to have a lung and another sinus surgery.  Sigh…..this momma is so tired….I’m so tired of fighting for the kids health….


What else can my kids have besides their mental disabilities????


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