San Diego, CA
I Wish to Leave an Echo in the Halls Where I Have Walked
Ever since I have memory, my family watched the MD Telethon while praying for a cure for the FSHD that devastated my relatives. Each year my Grandmother, Father and many Aunts and Uncles became progressively weaker requiring more help and adaptive equipment.
At age 17 after an athletic and active youth, my right shoulder dropped in the classic arc known to the FSHD profile. I kept a journal to chronicle my feelings. On that fateful day I made this journal entry, "I do not know what is in store for me. Will I be as severe as my father? What am I meant for? Why am I here? I must reach deep down inside of myself and then outward to find meaning for my life."
Twenty years later I discovered the FSHD Society which became a lifeline for my questions and emotions. I met patients who looked like me and shared my fears and concerns. I met scientists who were dedicated to finding answers, treatments, and cures.
At that moment I knew that the FSHD Society was where I would fulfill my destiny. Fast forward to today. Now as a Senior looking backward and assessing my life, I can proudly answer the call of my youth by leaving a legacy to the FSHD Society. May a treatment come soon enough for me to benefit but even more importantly, I will be satisfied knowing it will be there for future generations who will hear the echo of my footsteps in the hall.