30 Days of MD: Crystal Rondeau

by Kevin Schaefer | September 10, 2020

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Day 10 of 30 Days of MD Topic: Medical Knowledge and MD This is @crystaleemarie’s story: I'm Crystal Rondeau and I have a form of MD called Spinal Muscular Atrophy Type 2. My family got the diagnosis when I was 1 1/2 years old. This diagnosis was the start of a very long battle. Every battle has losses, pain, struggles, times where you just want to throw your weapons down in defeat. They also have bittersweet triumphs. At 3 years old, SMA2 started affecting my respiratory system so badly that I would battle over 300 pneumonias and collapsed lungs by age 12. This is unheard of. Doctors and nurses could not understand how I was still winning by the age of 7. I had also spent so much time in the hospital that I developed a thirst for medical knowledge. I'd read the nursing textbooks, I learned how to read my own x-rays, I was helping make my medical decisions. I was comfortable in the medical world where most kids aren’t. The nurses and doctors became my friends, family and mentors. From a very young age, the staff and my mom taught me this… You can take your situation, no matter how painful, dark and difficult, and turn it into something powerful. At 5 years old I began allowing resident doctors, student nurses, families and other patients to learn from me. My form of MD has continuously thrown different foes at me. At 13 years old I was diagnosed with Acute Lymphoblastic Leukemia…it wasn’t MD related but I am the first person in the world with ALL and my form of MD. My doctor had to figure out how to treat me without damaging or killing me. And I had to use everything in me to beat it. I didn’t come out unscathed but I won. A few years later there was a girl in Europe who was presented with the same battle, and her doctors used my treatment plan to help her. How has MD affected my life? There is no way I could choose just one aspect because it is my life and it’s the reason I am who I am. Sure, it has beaten me, broken me and scarred me but it has also made me strong, resilient, determined and a teacher. It’s even given me the drive to be a model and activist. I honestly wouldn’t trade that for anything. #MDAwarenessMonth #MDAwareness #30DaysofMD

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