My name is Christophe and I am from Norwood, NJ. 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 virtually no clinical trials underway at this time. MFM is a progressive disease in which my muscle strength progressively weakens over time. I walk with the use of AFO 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 was diagnosed with complete heart block and had a pacemaker implanted. Since that time I have had 2 heart transplants, 1 kidney transplant, a Cholecystectomy (gall bladder removal), liver stones, diabetes, and most recently a tracheotomy. 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. 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!
Thursday, June 28, 2012
The Life I Live!
My name is Christophe and I am from Norwood, NJ. 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 virtually no clinical trials underway at this time. MFM is a progressive disease in which my muscle strength progressively weakens over time. I walk with the use of AFO 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 was diagnosed with complete heart block and had a pacemaker implanted. Since that time I have had 2 heart transplants, 1 kidney transplant, a Cholecystectomy (gall bladder removal), liver stones, diabetes, and most recently a tracheotomy. 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. 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!
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love you chris! xo
ReplyDeleteYou are such an inspiration Christophe! There is not a day that goes by that I don't think of you and pray for you. Keep on living! You are so strong!
ReplyDeleteYou are an amazing young man, Christophe! What a gift you are giving all of us in sharing your story. You are teaching us not only about your illness and organ donation, but how to live life one day at a time and to always have hope! May God continue to bless you, your "angel" mother, and the rest of your family. I look forward to reading future posts.
ReplyDeleteMrs G