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Stories of NF: Swan-Christopher W.

By June 9, 2020December 5th, 2023NF1, Story of NF

I was diagnosed with NF1 when I was 12 years old. Growing up with NF1 was tough. When I was young I didn’t truly understand why or what was going on. I only knew what my mother told me, “That God loves me no matter what, and He has great plans in store for you.”

I grew up on quoting a scripture from the Bible, Luke 2:40, which said, “And the child grew up strong in body and spirit, he was filled with wisdom, and the favor of God was on him forever.” I quoted that daily, had me believing there was hope and light at the end of the tunnel. So I really had no choice but to embrace what I have. But I did not allow it to define who I was. I knew deep down that I WAS SOMEBODY and that I WAS GOING TO BE GREAT. It was extremely hard to go to school every day and enjoy being a normal student. Kids would pick on me and laugh and call me all types of names.

I have it on my left fore-arm, so just imagine wearing t-shirts in the summer and dealing with insecurities and low self-esteem. As I grew older into my teenage years, I began to embrace it and do things that no one would have thought was possible. I had tremendous all-around talent. I was great at entertaining an audience, so I joined my high school drama team, and I was nothing short of excellent. I knew I could put smiles on people’s faces if they saw me perform. I also joined the J.R.O.T.C., The Marching Band, ran Cross Country, and participated in Youth functions and events and had the privilege to speak at our Youth Events.

As I entered my early twenties, I decided to have surgery to remove some of the bulkiness in my left fore-arm. The surgery was successful, but the doctor could only remove 90 percent of the tumor because with it being so close to the nerves, he did not want to do any nerve damage. I still have the scar on my arm till this day and it’s still a bit bulky, but I learned to take it easy and just enjoy having the pleasure to use both functioning arms. I learned the best way to counteract any growth on my body is to eat healthy, drink plenty of spring water, and feed my mind inspiration and motivation. My family and friends are great supporters and it keeps me going and giving it my best effort daily.

When you first learn about your situation, you do the best you can to find a cure as possible. The lessons I learned in my life was that I can only BE THE BEST ME day-by-day. For my future, I think about it quite often, but then I bring my mind back into the present moment and enjoy the 24-hours I can maximize. I feel the times we live in now are good times, because we have the right technology to cure that will solve everyone’s neurofibromatosis. The plans I have for my future are bright, and it helps me to understand that I am not alone. Great things are in store and I believe with faith and hope all things are possible.

The message I want to leave you with is this. We may not be able to control the hand we were dealt with, but we can at least do the best we can to reshuffle and stack the deck.


Have Fun Doing What You Love. Make life fun and exciting every day because you only have one life.

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