My name is Nick Mahler and I have a very rare muscular skeletal disease called Fibrodysplasia Ossificans Progressiva or FOP for short. I live in Wylie Texas and I was diagnosed with FOP when I was just 18 months old. FOP has progressed so much that I only have limited movement in my elbows wrists and fingers, every other joint including my jaw are completely wrapped in bone growth. An FOP flare-up can occur from trauma to a muscle such as bumping into something or sometimes when a butterfly flaps its wings in Argentina I will have a flare-up. Currently there is no cure for my disease, just pain management and extra care not to get injured.
I’m a ferocious lover of life, possessing the courage and loyalty of a warrior, but the morality of a pirate. A man of huge appetites and wild passions. Impulsive, unreflective, optimistic, conceited, generous, and brutally honest.