The story of Miles
Hi! My name is Miles and aside from being ridiculously cute, I also am really funny (though most of the time I don’t even realize it). My rare journey began before I was even born! You see, at one of my mom’s prenatal appointments a doctor noticed that I didn’t have a nasal bone. From that day on, lots of doctors have been keeping tabs on me! When I was born, we learned that I have a mutation of the GGCX gene, but it’s confusing because it looks like I have another genetic difference called CDPX1. Confusing stuff!! I have blue and green hearing aids that glow in the dark, and red glasses that I like to put on my Potato Heads. Since my rare disease causes me to have low muscle tone in my legs, I have to work really hard to use them. I have lots of appointments with therapists to work on standing up. Mom and Dad say I’m the most resilient and determined person they’ve ever met. My rare disease also causes my blood to clot at a slow rate, so we keep an eye on that. Oh also, because my condition is a type of skeletal dysplasia, my spine has to be checked regularly. Last year I had surgery on my spinal cord and mom said I was back to chasing my brothers the next day! Anyways, that’s my story so far. If you’ll excuse me, I’m going to get back to singing all the songs and using my incredibly imaginative brain to play with my toys.