He actually didn't touch it until Friday...didn't even open it. But last night he opened it and started tuning it to get ready for his lesson today. On Friday his doctor emailed him his most likely diagnosis, which is Leber's hereditary optic neuropathy (LHON). While the members of his medical team feel that this is the actual diagnosis, protocol still says for them to continue the battery of tests they want to run. However, he has the markers for the disease and they have ruled out almost any other possible cause. The extra tests are just a precaution to ensure there are no other underlying disorders. This has only made my son more set against more tests since there is no cure and the doctors are almost certain this is the cause of his blindness. The doctor actually gave my son his cell phone number and told him to call any time.
At least we have a diagnosis, or at least a most likely diagnosis, and it is not life threatening. It is however, life changing for my son and our family. Thank you again to everyone for your support during this time. It's going to be difficult over the next few months but I believe my son will adjust. Now we need to start learning how to get him the help he needs to move forward in life. |