Stories of NF Emily G.

I was three months old when my leg started to show signs of pseudoarthrosis of the right tibia bone. I’m now 24.

NF has affected me in more ways than one. I live with a pseudoarthrosis of my right tibia and it hurts badly on a daily basis, I can barely walk anymore. As of January 7, 2021 I will have below-the-knee amputation done to help stop severe bone pain I feel as well. I feel nothing on the sides or bottom of my leg. I also can get tumors anywhere; I have one in my brain that’s not able to be reached to be removed, so we are monitoring it. It’s hard living through this pain. Learning how to redo everything after amputation is going to be harder.

I stay motivated because growing up having all these surgeries I did, I taught myself to never give up and to keep going. What motivates me every day to keep going through the severe bone pain and not being able to feel anything in my leg is my beautiful daughter Lily. She gives me the spirit I’ve lost this year due to all this pain. She’s definitely going to keep me on my toes after I have surgery.

I love art and making things. I also love to get canvas art and color it to make it my own. I also love ANYTHING Nightmare Before Christmas; literally it’s my happy thing. I’m single momma to a beautiful little girl who also has NF1! I love animals and reading and also keeping to myself because no one really understands me!