Clinical Trial – Day 1
I guess you can say – “we are lucky.’ After 5 days of putting Alexander through extensive testing (a 3 hour MRI, extensive bloodwork, ECG, Pulmonary, 2 days of physical therapy assessment, fecal testing (ek!) and a physical exam), we received official word last night that he was accepted into a clinical trial for a […]
Two classmates – two trials….heroes amongst us
Today I had a sad day visiting a classmate of Alexander’s at Children’s Hospital. He had a malignant brain tumor removed 6 days ago. His name is Cooper and he is 9. His mom is a friend of mine, who recently found out about Alexander having Duchenne, and graciously committed herself to helping us raise […]
Day at the Clinic
Today was the Center for Duchenne Muscular Dystrophy clinic day… A completely dreaded day for us all. How exhausting both emotionally and physically. The first thing I must say is the fact that Alex did NOT want to leave the house this morning to go to the “clinic”. He absolutely had a meltdown about how […]
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 […]