Living with Neurofibromatosis

I was born with a bowed left tibia that my parents noticed at 3 months of age. By 8 months of age my leg was placed in a long plaster cast to protect it. It broke in a cast about 2 weeks after. I have had many operatins since infancy to strighten and mend it.. with this condition it never mends. I had bones taken out of my hip at age 8 and again at age 13. I had wore a long heavy metal brace also when I was not in a cast. I was in a cast for up to 3 years at a time for each operation. I had pins, rods, fixaters, and many more things done to my leg. I had a calfs bone put in at age 18 months to hepl it mend. It never did. My leg became very deforumed and underdeveloped form the years and years in a cast or brace, Amputation was suggested to my parents many times as a child they freajed and rejected this. In place I was put through many unsuccessful operations. My feet were 4 size dufferent as my foot could not grow form the operaations and braces.. I had a very painful ankle fusion also my ankle was very painful and not stright. This also took over 4 yeras to mend and I spent those 4 years in a cast..Well just 5 yeras ago I developed a major bone infection form all the pins and operarions and had no choice but to amputate my leg. It was my leg or my life. Odd since amputation was a first suggestion as a child. Iam in major pain 24/7 because the more pain and operations a amputee has before the more pain they have after. And the more nerves that are cut the more damage to the leg..Iam the youngest of 8 children and the only one with this condition this is assoicated with NF1. My husband and I have decided not to pass NF on to our children and wanted to stop the cylce with me. I did not want to pass it on to my children. I have had avery hard life with this and a total of 17 operations on my leg..It has been a very long hard journy and it continues. I will not let this stop me from trying to have a life. Thanks for reading my story!