Hi, my name is Derek James Duvall and this is my story…….

I’m typical 18 year old in the sense that I like video games, cars, hanging out with friends, being on the phone with my girlfriend. My girlfriend is awesome! Have great friends, a huge family, and have had a wonderful group of doctors that have helped me through the years. I have a rare brain disease called Pelizaeus Merzbacher Disease (PMD Luekodystrophy). What is that you ask? Here is a link above if you want to read more http://emedicine.medscape.com/article/1153103-overview. I Have lived my life in a wheelchair, but that hasn’t stopped me from enjoying my life. I have rode a roller coaster, climbed a lighthouse, swam, gone to camp, competed in the Equestrian Olympics, love bowling, flown in planes, been deer hunting, and the list goes on and on. And best of all I am already growing a mustache that I am very proud of.

Always bee active an active guy, this world has been open to me, vacations, opportunities, and a wonderful group of friends, family, and medical commnunity which has already been mentioned and probably will be again. 🙂 For all my disability has done, I have beat a lot in my life. No feeding tube (never got one), have had bumps, bruises, breaks, and scars to show off. Beat a double hip surgery and full spinal fusion. With PMD, Mitochondria’s disease, scoliosis, low muscle tone, contractures, surgeries, doctor appointments, it has been an adventure.

I was about 6 months old when the doctors noticed something was different. I began to miss milestones, had the nystagmus (shaky eyes), low tone. Then it all began…….. the tests, therapy, tons of doctor visits, and on, and on, and on. It was overwhelming to my parents. Not knowing what was going on, having to struggle through the maze of doctors, diagnosis’, my possible future. My parents were told I may not live to the age of 10 or so. There was absolutely no telling. No local support groups. At first my parents were told I just had Mitochondria’s disease. They had to perform a muscle biopsy to determine that one……still got a scar. Girls dig scars. Lol. About the age of 2-3 years I was getting my regular MRI when they found leukodystophy (which basically means a disease of the white matter of the brain). Just a leukodystrophy, well, we had an awesome therapist named Mr. Vaughn at the time who kept asking what kind of leukodystophy? So we did just that. We kept asking, kept looking. Finally in about 2005-2006 my mom met up with Dr. Shauffner at a Mito Dinner in Atlanta who thought I fit the description of PMD and would do the testing to find out. Sure enough that is what it was.

Overall I have been a pretty blessed kid though, overcome a lot in my life. Most kids with PMD are on feeding tubes, have had multiple surgeries, seizures, no speech, among many other problems, so far only a few surgeries. With the help and love of everyone that has ever known me I have reached the age of 18, healthy, happy, and still going, despite the rough year that just passed. Since my surgeries, I have developed contractures, become too heavy for my family to pick up, and been in a lot more pain……. I have a bike that I am using, thank you to Freedom Concepts and First Hand Foundation. Still doing some stretching, hoping for more equipment to help me get back to the active kid I have always been, I am going to keep going to camp every year I can. Soooo looking forward to being more active and playing video games. 🙂