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Spinraza Journey, The Waiting Period

I know this entry has been long anticipated. I've been waiting with bated breath to write something as a follow up. I battled about whether or not to mention any accomplishments. I feared that if I spoke about the changes I felt, maybe those changes would disappear just as soon as I'd accepted them as reality. The truth of the matter is, we've all had our fingers crossed for the best possible results.
But nobody, not even myself, expected miracles. 
Two days after my first dose of Spinraza, I lifted my arm straight in the air and held it there for two minutes. 
Four days after my first dose of Spinraza, I noticed that my stamina had increased. I was able to do more things with less resistance from my body. And at the time I normally was getting fatigued and ready to lay down, I still had the energy to continue my day. 
It's now been nine days now. The toes on my right foot feel stronger, almost as if they want to flex, something they haven't been able to do in yea…
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Spinraza Journey, Injection #1

My neurologist approached me once I arrived. "Are you ready for today?" Am I ready? I've been waiting for this moment my whole life. After being told "there's no cure", "there's no treatment", "there's nothing we can do" for the last 27 years, you better believe I am ready for something that gives me hope.

First I had to pee in a cup. Easy. I stuck a lubricated catheter through a hole that was surgically created in my belly button. The urine drained into a bag, I pulled the catheter out, and then poured the urine into a sterile cup. Next, a routine blood test. I brought hot packs with me because, like many with SMA, my veins are tiny and not good at giving blood. Thankfully my veins willingly gave up my blood this time, almost like my body knew that something good was about to happen if it would cooperate. 
Then a nurse brought in the box of Spinraza. When I saw it, I completely lost my cool. I swear I've never smiled as big …

Spinraza Journey, Intro

Spinal Muscular Atrophy has always been both my art and war. That might sound a bit crazy, but until you see someone with SMA in action, you might not appreciate how much it truly is that. It's a balancing act, and I say that realizing its irony: I lost the ability to balance on my feet many years back. But to expand on what I meant by art and war- I praise my muscles for doing the silliest and simplest of things, like lifting my arms up enough to put on my own hat. I fight my muscles to do things they can no longer do, like flex the toes on my right foot. The war is the progression my disability causes. The art is resilience and survival.

And the reason for this blog is the miracle drug, Spinraza, which was approved by the FDA in December of 2016 in the U.S. after years of clinical trials. Until then, there has never been an approved treatment for Spinal Muscular Atrophy. 
Today I received my first loading dose of the drug via an intrathecal puncture. 
I'm choosing to share t…