In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy held an essay contest for tickets to a Charcot-Marie-Tooth disease event. We asked members of the Charcot-Marie Tooth (CMT) community to tell us their stories, in hopes of inspiring everyone in the rare community to keep fighting.
The below essay was written by Quentin Martin, Charcot-Marie-Tooth Disease Warrior.
“It is not the events or experiences that befall us in life, that defines us as a person, rather, it is what we choose to do with those events and experiences that defines us as the person we truly are”.
Well, my story begins when I was a little boy growing up in South Georgia. Like most little boys my age, I loved the outdoors, we lived in the country. And like most boys my age I loved to climb trees, fish, camp and go skinny-dipping with my friends.
Two traumatic events happened during those years. After years of many doctors test and hospital stays I was diagnosed with Charcot-Marie-Tooth Disease at the age of 11 years old.
A year later, at the age of 12, I lost my vision. It may sound crazy to a lot of people but I am thankful for these two events in my life, for if it were not for these events I would not have become the man I am today or have had the opportunity and privilege, to meet and become good friends with a lot of really good people in the CMT community.
When I lost my sight, I was a devastated and a very scared little boy. I fell into a deep depression. I started attending The Georgia Academy for the Blind in Macon, Georgia, which turns out, was the best thing that could have happened to me.
The staff at the school were incredible, they were very encouraging, especially my swim coach, who hammered it into my head, to never let my disabilities get in the way of me living life to the fullest. But most of all, between my coach and my loving mother, I was taught, compassion and selflessness towards others. My mother touched the lives of anyone that she ever met, with her loving care and compassion. So throughout my life I have tried to do the same.
As the beginning paragraph says, I chose to do the best that I could with whatever life had to offer me and I have lived a very challenging, yet very rewarding life. Over my life I have met a lot of really inspiring and good-hearted people, including children of all sorts and disabilities which I am honored to have met, as well as all of my great friends in the CMT community I have known for years.
With this essay I would like to focus not on myself, but on those that I consider to be very worthy in their daily struggles with CMT.
I have been involved with the CMTA in one form or another for many, many years and have become great friends with someone that I consider to be my mentor, Jeana Sweeney, who, with her encouragement and motivation, helps keep me going each day. I have tried over the years to solicit donations from anyone, but my real passion began in 2015 with my Facebook page, Quentinscause2015, (aka quentinscauseforcmt).
My page gives me a great platform for educating the public about this very common, yet relatively unknown and misunderstood neuromuscular disease, we call Carcot-Marie-Tooth. I will have to admit my main focus is on children that courageously live with and overcome their CMT daily, they are the ones that truly inspire me. I have had the privilege of talking to parents that have come to me about their child’s disability and I try to answer their questions, and if I can’t, I will spend all day if I have to to, to find the answers to their questions. If I can, in any way, put a parent’s mind at ease, that makes what I do all worth it.
In my opinion, the really worthy people are those such as, the mother that stays up all night because her 16-year-old son has just had surgery for his CMT. Or the one mother I know very well that has CMT herself, as well as her six-year-old little girl Erykah. Or the mother I talked to about her fears that since her husband has CMT, that her two small boys have it as well, but is afraid to have them tested for fear of the results. Or my good friend in Australia, who asked me to help her find a good neurologist in her area, for her little girl who has CMT.
But there is one that stands out the most, we have been CMT Facebook friends for about three years or more. He suffers from CMT and his wife left him because she could not handle the reality of their two young daughters, also having CMT.
So he is left to not only deal with his own CMT, but his two very small girls, also with CMT and having to watch them go through several surgeries. This man also began a CMT group that I help manage with him. He is a true friend and I very much admire him.
These are truly the ones for which I consider to be worthy. I admire them all for their fortitude and ongoing battle against CMT, I just try to be an advocate and help them along their way.
It is my obligation to pay it forward, because along my life’s journey, there were so many people, that so freely and unconditionally helped me along the way. Instead I would like to nominate someone and he may not like it, but I am going to give his name, Justin Redford, with his two small girls Kiersten and Zoe.
He started the group “Our CMT Buddies”, which has attracted over 650 people, where we all can talk freely about our CMT. Not to downplay any other group, all of the CMT groups are wonderful and I am so privileged to be a part of them all, (a part of the entire Charcot-Marie-Tooth Community, that is).
Thanks so much for giving us the opportunity to “Tell Our Story”
