Living Rare Blog

05/11/2023

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When I decided to go back to school, I certainly didn’t anticipate what happened next! I’m Graduating! As mentioned in my previous post, I applied to SUNY Adirondack to pursue an Associ…

04/22/2023

The diagnosis was the beginning but certainly not the end! How Am I Supposed to Feel? Following my diagnosis, I was filled with so many emotions! Naturally, I was worried and apprehensive about wha…

04/08/2023

I knew what I had couldn’t be something common, but no one could have anticipated this! What is MEAK? One day in November 2014, we unexpectedly got a phone call from the scientist in Australi…

03/17/2023

Over the next 13 years, I would have many more hospital stays in search of a diagnosis. The Journey Begins… My parents and I went to many hospitals in the New York area as well as traveling t…

02/24/2023

It’s still a work in progress, but welcome to my blog! Here is my first post…

How I went from celebrating my 10th birthday with my friends to being rushed to the hospital in an ambulance My 10th birthday It was two days before my 10th birthday. My mom had planned a party for…