CLINICAL TRIAL – No easy choices
On a Saturday morning at 9:00am I received a call from our Neurologist at UCLA. He called to tell me the news that there is a clinical trial at UCLA that Alexander could qualify for. After a 45 min conversation, I was left hopeful but at the same time anxious and a little sad. The […]
Duchenne / Hidden blessings
So we as parents of a child with what is considered a “rare” disease are in a very difficult spot to say the least. Not only does our beloved have a disease that we had not heard of until a few years ago – we are now thrust into a whole new universe that we […]