IF THESE FOUR WALLS…

Today, I had the chance to escape the same four walls I’ve been staring at for the last several weeks. The same four walls that have guarded me against everything and everyone in hopes of staying healthy. If these walls could talk, they’d tell a tale of a girl who stayed in her pajamas for […]

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PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 4

Well, it’s official. I am literally worth [half] a million bucks. Spread the news. Shout it from the rooftops. Tell all the single fellas out there that I’m a precious, rare gem who’s looking for love and measures her worth by the amount of Spinraza doses she has received. Yes, that’s right, ladies and gentlemen. […]

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WHEN TAKING A LEAP OF FAITH

I woke up the other morning feeling frustrated and discouraged about not seeing any measurable progress from this treatment thus far. When my mom came in my room to get me out of bed she said, “be positive, Alyssa. You have always used positive thinking to get you through the hard times.” She was absolutely […]

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PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 3

Another day, another spinal tap. I think that’s how the saying goes, right? The ride to Boston Children’s was anything but peaceful yesterday. Bumper-to-bumper traffic on I-95 hit and, suddenly, I was most definitely going to be absurdly late to my third spinal tap procedure. Although only an hour away, smooth cruising en route to […]

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