Devoted Mom

My son suffers from ALGS. He was diagnosed at 3-yrs of age by an excellent cardiologist at Seattle Children's. Although he does not have the liver complications, there are numerous other systems that we continue to find are affected as he grows: inner ear deformaties, van druesen of the optic nerve, vascular abnormalities, etc etc etc. I'd love to be able to share provider information - doctors in the area that others have found to embrace the disease and go "above and beyond" in treatment.