Chris Dezern was diagnosed with Neurofibromatosis when he was thirteen, and was only expected to live until his mid-twenties. Chris is now 50 years old, which is more than double his life expectancy. We have not met a doctor or medical professional yet who can explain why, but we thank the Lord every day for his life on this earth.
Living with this disease can be very difficult at times, but that never stops Chris. Chris is a high school graduate as well as an Eagle Scout in the Boy Scouts of America Organization. He lives independently and enjoys walking to the local library, participating in community events, attending church every Sunday, and has never met a stranger. Chris not only lives his everyday life to the fullest, but is also always up for the next adventure. A few years ago while on vacation, he wanted so badly to try indoor skydiving. After much discussion with his family, his brother-in-law said “Why not let him go out with his boots on if he’s going to be a part of this world?” So it was decided that he would try indoor skydiving, and he had an absolute blast!
Not every day is great, however, as Chris faces challenges on a daily basis that most people take for granted. He is extremely visually impaired. His tumors make it difficult to eat and talk, and in general he just looks different. To be completely honest, not every day can be filled with skydiving and Boy Scouts; some days are just really hard. Some days he gets discouraged and tired of fighting, but on those days his family and loved ones pick him up and encourage him to keep going.
Luckily, Chris doesn’t have too many of those days, due to his happy disposition. In general, he doesn’t let his disease stop him from getting out and meeting new people because he loves to socialize and be around others. In return, everyone who comes in contact with him walks away a changed person. Chris has that unique way of making people want to be better individuals. He makes someone want to hold open one more door or be just a little more patient in that check out line. And maybe that is Chris’ purpose in this life; to bring out goodness and compassion in others. What ever his purpose may be, Chris is certainly a special individual, meant for so much more than this disease.
What is Neurofibromatosis?
Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time.This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States(one in every 2,500 to 3,000). The neurofibromatosis affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Hunington’s Disease and Tay Sachs combined.
NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although genes for both NF-1 and NF-2 have been identified.
NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he cannot pass it on to his/her children.