Genetic testing update

I just wanted to give an update since we had been waiting on Roman’s genetic test to confirm his diagnosis, and my genetic test to confirm whether or not I am a carrier for the Becker’s gene. Unfortunately, I received a letter in the mail from our insurance company saying they Will Not cover Roman’s tests, and our Geneticist continues to get turned down for my carrier tests as well. This is all very strange to me since they covered Chase’s testing without any questions, of course we were still left with some out of pocket expenses, but the fact he got any coverage at all while Roman’s is being completely denied, makes no sense to me. Insurance stuff has never made any sense to me. The good news is, now that we received a denial for Roman’s tests, the Geneticist can send out his sample for testing through a group called Duchenne Connect who will give us a grant and we shouldn’t have to pay anything out of pocket for him. The bad news is, they do not have grant money for carrier testing so we are still left to figure out how to get my sample tested since the out of pocket is $1500. The Geneticist said she is pursuing other avenues, but in the mean time, she recommends I go ahead and assume that I am a carrier, and start meeting with a Cardiologist to check for the cardiomyopathy that I am at an increased risk for, and have follow-up testing every 5 years thereafter.

Currently Roman remains symptom free. I am really struggling with the idea that Roman has MD. I know anyone who knows Roman, or has seen him in action, has the same thought: How in the world does he have the same thing Chase has? If it weren’t for his CK levels being high, indicating the same muscle breakdown as Chase, I would think this has to be a huge mistake. Since we still haven’t had the genetic confirmation, I guess a part of me thinks they could come back saying he doesn’t have it.

We are looking at probably another 4-6 weeks to get these results back for Roman, and I’m not really sure if we will ever get my results, which is pretty frustrating, but at this point I don’t know what it will really change for us. We continue to pray for healing, for advances in medicine, and for peace and superhero strength as we go forward. The support and prayers all around has been amazing and we truly appreciate them all!