William Sylliboy

On June 30, 2002, I contracted NF and was misdiagnosed with cellulitis. Fourteen hours later my wife and I went back to the emergency room where Dr. Singh told me I had the flesh eating disease and was sent to Halifax, July 1st, where I was seen by several doctors. After my wife left to go home, I got worse throughout the night. At 10:30 the next morning, I went to the operating room where they removed the skin from my right arm along with muscles. I went into septic shock and contracted pneumonia I can remember several doctors working on my arm. One was a resident, Dr. Jason Williams, where he checked my shoulder underneath the skin to see if they had removed the disease. They got it alright and it hurt like hell. They gave me an experimental drug to help fight the septicy. My wife was informed that it was experimental and it was the last resort to save my life. It work God bless her. Dr. Sigurson and a team of residents performed one time only skin grafts. They took three layers of skin off my right thigh and two layers from my left. They performed a miracle. The doctor told me I was really lucky I survived. Really I was dead - someone must really like me in heaven. Two years later I lost my right middle finger and got about 75% of right arm moving. I had a chance to go to the men's national and na indigenous games but the disease got to me before I could go. After I had realized what had happened the doctors told me I would never play again. One year exactly to the day I got NF, I played in a tournament and did better than I had played before. This I played two games and just waiting for millbrook first nation to hold their tournament so my team can qualify for the tournament to go to Buffalo, NY, na indigenous games. I have read the stories here and there right your never be the same I still feel a lot of pain and had been to the Halifax infirmary several times due to several flare ups. The whole staff at the burn unit, ICU, and Dr. Sigurdson and his staff, I owe a debt of gratitude and thanks for saving my life. I still have my wife (she been there for me since day one) and can still enjoy my five children. Oh yeah, the experimental medicine was protein c or strepvax. I was the 22nd patient that was given this drug. 21 people before me lived and a couple others died of complications not the drug. What they gave me was last of what was left. I'm a living miracle. from NF to coma pneumonia septic shock and five initial operations and four more to remove the middle finger. I hope you read this and it inspires other survivors that when your down in time you'll bounce back maybe even better. I feel for you all. My love.