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The Basketball Hoop

There’s a basketball hoop standing in my backyard.   In February, Alexander begged us for it, even though his walking began to decrease in December. He loved it and was so proud of himself every time he would make a basket, albeit the hoop was hung very low to accommodate him.   He was flip flopping between […]


April 26, 2016   As I sit bleary-eyed  on the airplane flying home from what should have been a “successful” trip to DC, I am still stunned and disheartened from yesterday after a grueling TWELVE HOUR meeting with the FDA and it’s Advisory Committee, that went from an historic event into a catastrophe.   I want […]

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 […]