Still Feel The Love For CCF :)

Man I have been totally out of touch but CCF is still going strong. I hope this summer I can kick up some interest 3 cent nickels - work and home life have kept me very busy. I have managed to keep up with GTP but my skillz are desperately in need of improvement.

It has been about three years that we received the news that we learned my 13 year old son has a degenerative neuro-muscular disease in the muscular dystrophy family (CMT, what I call the "unpopular" MD). A large part in my lack of posting has been dealing with the new normal that changes as he loses ground. I have been a bulldog in research, therapies and making sure that he knows that he can still reach his goals and not give up. It has been a painful period for him tween to teen losing leg strength, hand/arem strength and the limb deformities that occur but he has learned to not only deal with the teasing but is now advocating for himself at 16 years old.

I have followed many treatments in development and one extremely promising on is starting phase III clinical trials. The age for phase II was 18 - 65 and they decided to lower phase III to 16 - um can we say I was on that in a heartbeat? Working at a pediatric children's hospital AND having supported the pediatric clinical trials center at my hospital gave me the resources to make sure this trial is a good fit. We got the news yesterday that barring any unforeseen surprise in the medical records, he has been accepted to the trial.

Realizing there is a chance that he could get placebo we are still moving forward. The medication has the potential to arrest the damage being done to his nerves (phase II results were incredible) and if this medicine does what I think it will, it will be a game changer physically and emotionally for him. We have a long year and half ahead but I trust that the good Lord is still guiding us in the right direction.

When he was first diagnosed three years ago, we were told there was nothing that could be done. I rejected that reality and created my own (shout out to Adam Savage!). I learned as much as I could and found a physiologist who worked with him to help him move more efficiently to save energy and build up the muscles that could be worked with. I changed how we ate and approached many things. He was already pretty good about thinking outside of the box and he has learned to do that even better.

The bottom line is when you are told, that is it, there is nothing that can be done, stick your tongue out at whomever is saying that.