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Stories of NF: Milan V.

By February 27, 2021February 2nd, 2024NF1, Story of NF

I was about 6 months old when my parents found out I had NF1. That’s a long time ago!

NF has definitely impacted my life a lot, mainly from a physical standpoint. Because of NF, my right leg is longer than my left leg. It’s been that way my whole life. It stopped me from participating in a lot of sports and even made it hard for me to run. I had to do physical therapy when I was young and skip out on so many fun sports that I loved to watch. I also have some attention issues and had to go to occupational therapy. A lot of mental pain was caused by all of this too and it hurt at times. Recently, I had a procedure to lengthen my left leg over a two-month period. They had to break several bones in my leg and put a metal rod, some screws and magnets in my leg.

I stay motivated in many ways. Firstly, I love to raise awareness. Right now, I am documenting my journey to recovery on an Instagram account called “Milans.Journey” and I’m trying to make as much noise as possible. In 2018, for the Philadelphia NF Walk, my family came out as a top 3 team for raising money as “Philly Philly for Milly Milly.” I want to be able to continue to contribute to help out because this is something that means a lot to me. I also make it known to not let my NF define who I am.

My life revolves around a few key things. It’s learning, exercising, writing and music. All my life, it’s been hard to focus and yet I do my best at school. This past school year I took five honors courses and one AP course in which I attained all As. While school doesn’t always make me happy, it helps me work hard and learn many great things, from a different perspective than most.

Exercising is one of my loves. While many sports, I cannot compete in, there is one sport I do. I compete in mixed martial arts (think of the UFC). I have trained in MMA for 12 1/2 years and it’s been with me as long as I can remember. I am a black belt in kickboxing and grappling at Tiger Schulmanns and in my December 2019 tournament, I got my first medals in my black belt division, placing 3rd. I also love to lift weights. It’s a great way for me to stay sane. While I cannot train right now due to my recovery from surgery, I still look to motivate all friends and teachers there.

One of my other passions is sports journalism and I write on a website called I also run an instagram account under the same name.
Lastly, music is a huge part of my life. I have been playing the guitar for 8 years and I love making my own songs. I write lyrics and make the melody and do it all.




Dream vacation 
Patagonia Mountain Range in the Andes

“Be happy, never satisfied” – Bruce Lee

My superpower would be super strength. I would love to be strong and use my powers to empower all NF people and show them all is possible. The NF doesn’t define me.