Stories of NF: Madison G.

I was diagnosed with NF1 as an infant, before the age of 1. I have some mild learning difficulties and severe scoliosis that has required multiple surgeries, rods, and a fusion. I have polycystic kidneys. Not that anyone in my family is tall, but I am the smallest by far (4’7”, 74 lbs, age 19).

I am the second child; I have three sisters, and I am the only one with NF. I have had, and am having another soon, surgery to remove neurofibromas (mine are plexiforms).

My whole life I have had to go to so many doctors and have so many tests and surgeries, and this will continue my whole life. I have adapted to what I can and can’t do physically and academically my whole life. I have always done the best I can, and have great support of my friends, family and my church. I just graduated during this time of pandemic, and will be attending college (maybe all online?) in the fall.

I took classes in early elementary education in high school, I will be continuing that in college. I hope to become a teacher or a teacher’s aide. I love to work with preschoolers. I am a day camp counselor in the preschool class every summer.