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Stories of NF: Sarah Anne N.

By August 17, 2021December 4th, 2023NF1, Story of NF

I was diagnosed with neurofibromatosis type 1 at 2 years old. Unfortunately, NF1 has impacted my life immensely. My plans for the future are uncertain at this time. I am at our hospital at least a couple of times a month. Having 3 brain tumors makes my life more difficult. I also just had another surgery for thyroid cancer. So I go every three months for ultrasounds, besides the 68 MRIs I have already had. Plus 14 different chemos, full brain radiation, lung biopsies, and 14 surgeries. I see many people who live their lives almost normally, but NF prevents me from doing so.

I have the HEART of a HERO period. I was given a grim diagnosis at age six. The doctors said I would live a year. Well, my mother is [also] a fighter, and she passed that onto me. I will be 21 in September. I stay motivated by my love of K-Pop Music. I do not have friends, so I have to figure out a way myself. That is one bad thing about NF…….if you look different or walk or talk different, you tend to be bullied a lot. I am legally blind so cannot drive. I just keep on keeping on, although I am depressed a lot.

Music makes me happy. K-Pop music is about Love, and acceptance. My Cats make me happy. My Family makes me happy.



Life goes on…

Dream vacation
United Kingdom or Seoul, Korea

To have energy