I had hoped to delivering good news, or at least an optimistic view about the road ahead; however, Nora's first Spinraza™ injection has made us question continuing treatment. There is a specific point I need to make before I begin. The "complications" we experienced were not attributed to Biogen, the drug Spinraza™ or the actual procedure. All of the frustration and anger we feel is specific to our local medical facility. In fact, Biogen was a huge reason why we were able to get this drug. We have been reading all of published medical documents and talking to other families who received injections since its release in December.
Note: There is language in this story that some may find offensive.
I have included it to give an accurate portrayal of our emotions, as most of this post is in dialog format.
Happy Mother's day to one amazing momma. Few could ever hope to match all that she does for her family. She somehow finds a way to amaze Nora and I almost every single day. Nora and I would be lost without her. She deserves more praise than I could ever give.
On December 23rd, 2016 the first ever treatment for SMA was approved by the FDA. The news was exciting, terrifying and saddening all at the same time. With all of those mixed emotions, we were also scared of what this would mean for Nora and our family. We have waited almost eight years to see a treatment or cure hit the market. Since the day she was diagnosed, there was hope that a treatment was just around the corner; one more year, two more...
An October update? but it's December! Yea, I know, [voice inside my head], but we need to get caught up and hopefully stop your constant nagging. Sheesh
I am going to try my best to get all of 2016 caught up. So prepare your hearts for Nora updates henceforth.
Okay, way back in October, we took Nora to her 5th Boo At the Zoo event. These trips have only been possible because of how absolutely wonderful and kind the staff is at the Knoxville Zoo [Yes, you Allison]. Each year, they allow Nora special private access to this awesome event. There are literally thousands of families that arrive in costume to trick-or-treat their way through the zoo. The turn out is simply...