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Stories of NF: Jamalyvett M.

By November 12, 2021February 1st, 2024NF1, Story of NF

I was eight months old the first time a doctor addressed the possibility of having Neurofibromatosis after getting a second doctor’s opinion due to the previous one indicating my cafe-au-lait spots were only birthmarks. Neurofibromatosis (NF1) has impacted my life since then in many different ways. So far I have had five different surgeries and three brain surgeries due to hydrocephalus. Because of Strabismus, I had surgery on my eyes and due to low muscle tone, it has affected my eyesight. I have also had a painful neurofibroma removed from my abdominal wall.

NF has caused other challenges at school, such as concentration problems, pain, speech impairment, visual impairment, bullying, discrimination, and rejection. I also have scoliosis, hip bursitis, and neurofibromas all over my body including my brain and spine that have affected my moving, running, walking, and jumping abilities. Neurofibromatosis has caused me not to be able to experience a “normal life.” However, I have had an amazing life with those who love me and care for me. I work really hard towards my goals regardless of having NF.

I am transitioning to school and the school district tried to seclude me in a classroom setting where it would not allow me to obtain a high diploma. The school did not want to work around my learning disabilities, regardless of being difficult. I have worked really hard to learn and be able to participate in school in order to achieve the best possible grades. It has been very difficult but also has been my journey with NF. I will not give up.    

It has been a very difficult journey, but I have family support. My family has helped and cared for me during my times of struggle, and that makes me very happy. At the beginning of the school year, I always provide an NF awareness card that my mom helps me create. It has my information and a website address that provides information to understand NF and why I am the way I am.

Now at 15 years old, I will be starting high school this year. I like to bake, cook and craft such as painting and ceramics. I have worked so hard to be able to maintain good grades. My goal is to be able to become a pediatric nurse one day and help other children who are fighting against a health issue and other conditions like NF.


Quick Takes


Life is hard, but with a positive attitude and love, everything is possible.

Favorite Song

Not Your Barbie Girl by Ava Max




I want to be like Jack-Jack and have all the superpowers.