My name is Lily Sander and I have Charcot-Marie-Tooth type 2E.
The road to my diagnosis wasn’t easy by any scale. I spent months as a small child in countless specialists’ offices, anxiously waiting for an answer. At this time, I had severe clubfeet and could barely walk. This was all too confusing and frustrating for any of my family members to comprehend. How can a healthy toddler progress into an immobilized state so quickly? The answer, we soon found, was CMT; diagnosed at the age of four by Dr. Michael Shy. A diagnosis was a relief but came with unfathomable weight. I am forever grateful I wasn’t sentient enough to fully understand my circumstances.
Less than a year later, I had life-changing surgery to enable me to walk. I spent many months recovering and relearning how to live with my new body. Three years later, after intensive physical therapy, I found my passion: gymnastics. It kept me busy and healthy; I became physically and mentally strong. The years spent doing what I loved were transformative, to say the least. But the fairytale soon ended, as I became debilitated with excruciating pain in my left heel. A few weeks later, I was diagnosed with heterotopic ossification. I was ordered to quit the sport I loved, the sport that changed my life.
Fortunately, things looked up from there. I started back with physical therapy and found my CMT family online. They have been invaluable to my journey. I found a new passion, fighting for minorities’ rights, focusing on disabled people.
I am excited for the future as science advances towards a cure and our society advances towards more inclusion. I am working towards finding hope and light when looking to the future, instead of fear and darkness. Follow along as I travel this road, we call life.
