On February 13, 2006, my nine year old son, Trent, was complaining of his legs hurting and just aching all over his body. We thought it was the flu. He slept alot and a had some fevers. We could only get chicken noodle soup down him and some hot tea. By February 16th, I was extremely worried and made an appointment for him the next day. I go to school at night but something just nagged at me to leave early, go home and get him to urgent care. I listened...THANK GOD!! As soon as the doctor saw him having difficulty walking, he came into the room right away, tested his reflexes (which he had none) and sent us in an ambulance telling me he had Guillen barre syndrome. As soon as we arrived at the hospital they performed a lumbar puncture and they told us they would come talk to us in an hour. Three-four hours later the doctor came in and told us that he just went down hill and they had to put him on a ventilator and he was not sure if he would even survive. By 6 A.M. his legs between his knee and ankles (both legs) had turned blackish purple.

It was another couple of days then they told me he was in septic shock and that he had strep A. I really had no clue what that meant. Over the next few days his fingers turned black and hard. They told me his organs were failing. I couldn't believe how fast this NF took over my son. He was loud and very athletic. After a week on the ventilator they felt he was improving and weaned him off the ventilator. The parts of his legs that were black blistered like burns, the doctors decided to amputate two fingers on the right hand, three fingers on the left and four tips, which left his right index finger the only finger untouched. They sent him to a burn unit to treat his legs. They had to remove all of the skin all the way around from the knees to the ankles and he just had a skin graft to close the wounds. Right now there is a portion of the graft that didn't take and there may be more surgeries ahead of him. He just was released from the hospital after two months. The doctors told me that if I had waited until the next day to take him to the appointment that he wouldn't have survived. I Thank God that he gave my son a second chance at life. For the last month he asks me all the time why this happened to him, I tell him I don't have that answer, I don't know why anyone gets it. I tell him it does happen for a reason, maybe he was meant to help someone later in life. I feel for all of you that survived this and my family and I will be praying for all of you who have gone through this horrific ordeal.

UPDATE: August 11, 2006
Trent is doing so much better. He had a spot on his leg where the skin graft did not take but it seems that it has healed, it looks practically closed. He has started riding his bike, scooter. He starts back to school on August 14th and is extremely nervous, he tries to hide his left hand (where he is missing 3 fingers and 2 tips). He is walking without any assistance. He lost 30 pounds and his having a very hard time putting it back on, we are pushing food, shakes, pediasure, boost at him all the time. The important thing though is he is getting better everyday. Thank you so much for this site, learning of other people's stories really helps. Shanyn Beggs