My husband has FSHD (diagnosed conclusively through DNA testing), and we want our 15mo. old son tested, but the insurance won't cover the test unless he has symptoms, which basically means they won't test him until he's in, at the minimum, his early 20s. (Symptoms can manifest from 20 to 60 years of age, and many people never know they carried the defective gene.) We want to be certain he dosen't carry the defect before he has children (intended or accidental) due to the growing evidence that the disease seems to be worse in each successive generation.
Does anyone know how to get the test without the insurance company, and without it costing a fortune? (We cannot afford the $700 our doctors said it would cost.)
Any help would be appreciated.