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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.

 

QUICK TAKES

Motto 
Life goes on…

Dream vacation
United Kingdom or Seoul, Korea

Superpower 
To have energy