I am thirty-two years-old and from Northern New Jersey. I first became sick when I was six years old with what I recently found out to be a rare degenerative muscle disease called "Myofribullar Myopathy" - with a mutation of my Desmin gene. Less than 100 people in the country have been diagnosed and there are no clinical trials for a cure being performed at this time. It is a progressive disease in which my muscle strength gradually weakens over time. I walk with the use of leg braces and I can barely climb a set of stairs. Over the course of my life, I have undergone a number of serious and complicated surgeries, often accompanied by extremely harsh side effects. When i first became ill, I had a pacemaker implanted, and since that time I have had two heart transplants, diabetes, a kidney transplant, dialysis, a Cholecystectomy (gall bladder removal), liver stones, and most recently a tracheostomy. My kidneys failed after I spent 8 long months in the ICU at New York Hospital. As a result, I was placed on dialysis for 3 painful years. Being in and out of the hospital compiled with discovering and revealing certain deep-seated secrets sent me deep into a drug addiction which lead to an overdose. As a result, I currently have a trach tube in my neck, and I sleep with the assistance of a ventilator every night. I have dealt with illness all my life and as difficult as things have been, I try my best not to let it affect my attitude and daily life. I love to laugh and make jokes. With the support of wonderful family and friends, I do my best to stay positive and hopeful that some day we may find a cure and hopefully a better understanding of this extremely rare disease. My mother is my angel! I would not be here today if not for her. I try to live a very active and social life and refuse to allow my limitations to hold me back. Most people have a hard time believing my story, and to be honest sometimes I have a hard time believing it myself. I have stared death in the face several times and refuse to give in. I have never been one to get down on myself or look for pity. We create our own destiny and I truly believe that. After all these years, I would like to share my story with the world in the hopes that anybody going through a similarly difficult situation may feel inspired and motivated to NEVER GIVE UP! I intend to spread awareness of my condition and organ donation. I would also like to give a voice to every nameless, faceless, illness that may be affecting someone out there and let them know that they are not alone. There is no question that THIS is my purpose in life!