My name is Connor Rumbley. I have Neurofibromatosis 1. I was 11months old when I was diagnosed. My parents never even heard about this disorder before then. It all was thanks to my sister. I was just standing up against things and trying to climb. I was not walking yet. Did not know how. Mom was in the bedroom doing laundry and I was crawling or sitting on the floor near her. I decided to pull myself up against my sister's toddler bed and climb on. It was only a few inches off the ground a very low bed. My sister, who was I think 1 1/2 yrs. old, had come in and she was not happy with me on her bed. She pushed me off and I fell into a container of her pajamas. I cried, and she was punished, but I calmed down when mom held me and she looked me over and didn't see any bruises or anything. I was fine or so she thought. The very next day, my grandma noticed that I was crawling only using 1 leg. Dad and mom took me to the pediatrician who sent us for an xray. They kept us and told us my leg was fractured. We were sent to Nemours in Delaware for my very first time. Mom and dad were asked alot of questions about what happened and if I always looked the way I did. The doctors fixed my leg in a cast but they wanted other doctors to come in and look me over and possibly get more tests done. Mom and Dad were confused. I was upset and hungry but I was not allowed to eat or drink because of tests that might be done. Mom still fed me her milk normally but she had to suffer too and was uncomfortable. The doctors brought in other doctors who saw my big head, coffee colored spots on my body, and the leg I broke was curved. They believed I had Neurofibromatosis 1 and they explained what that means and what my parents would need to do to keep me well. I would have to come back and see many doctors every 4 to 6 months for the rest of my life. I had a test done where they saw tumor things on the insides of my body. They are not Cancer but they have to be checked regularly. It was a very long day and night but we were sent home and I could eat again. I learned to walk wearing a cast in an out stretched leg. I would eventually get leg surgery to straighten my leg to look normal. I would also show other symptoms of NF1 by the time I went to school like ADHD and Intellectual disability disorder. I need lots of help in school and even though I am 14, I still am told my mind is that of someone much younger. I also have to wear a leg brace all the time to protect it. I also had Scoliosis and had surgery for this too. It helped straighten my back. Scoliosis is another symptom of NF1. I can do alot of things other kids do. I love dinosaurs, swimming, movies about monsters, I love to draw, I love my plush animals. I drew me with my plush Sharky in one of them. You will see Bronty and Sharky and a few other plushies on my other drawing with the volcano I like drawing scary things too. I also love playing video and board games. My favorites are Monopoly and Mario Kart 8. I like playing outside with nerf guns that shoot colorful darts. I even got to go to a dance with a girl named Amber. Sometimes my family takes me on vacation to the beach, waterpark, or amusement park. I can go on alot of rides like bumper cars and water rides. I have Neurofibromatosis 1, but I try not to let it stop me from living the best I can.
Thank you for listening to my story.