I am truly sorry to learn about your son's struggles; as a parent, I can only imagine how difficult this must be for you.
As @johnbishop suggested, I moved your discussion and combined it with this existing discussion so that you can meet @suska@cpierce101604q@mikedurham34@jjtaylor95@tomr; I'm certain they will join us and share their insights and experiences with granulomatosis with polyangiitis (Wegener's granulomatosis).
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
Even though this condition is rare, and most often affects people between 40 and 60 years of age, it can occur at any age. Here is a published study that you might wish to view:
– Long-term remission in pediatric Wegener granulomatosis following allo-SCT after reduced-intensity conditioning https://www.nature.com/articles/bmt2010126
@rphillips85, may I also ask if it has affected only the lungs for your son? What treatment options has he been given?