You’re going to want to read this. Our NF Champion Cheynne Duarte Fuentes took time to write her beautiful story about life with NF.
My name is Chyenne Duarte Fuentes, and I was diagnosed at the age of 11 with Neurofibromatosis Type 2.
I inherited the disorder from my dad, who was diagnosed at the age of 18. I didn’t really know about my dad’s disorder until I was diagnosed myself. I knew my dad was deaf and I knew he was sick sometimes, but that’s all I really knew. My dad lost his hearing at the age of 21, so he had been deaf all my life, and sign language was how I communicated with him.
I had vision problems and some of the café au luit spots, but I wasn’t diagnosed until my right eye lid began to droop. My dad took me to the doctor thinking I had pink eye, but it wasn’t pink eye. Soon, not only was my eye lid droopy, but I lost control of my eye as well.
After seeing different specialists and having an MRI, I was given my diagnosis. The doctor said, “You have the same disorder as your dad and you have two acoustic neuromas, which are the same tumors he had. Can you please sign that to your dad?”
I tried to not only process what he said as I signed to my dad, but also watch my dad’s face drop as I had to be the one to tell him his little girl suffered from the same disorder that left him deaf. I also had to tell him that I had the same tumors he did.
I remember going home. Our neighbors were waiting for us and hugged us as we both wept.
That night I could hear him crying in his room, and I was still trying to understand what would happen to me. Would I lose my hearing too?
School was hard. I got teased a lot because of my eye. I was very athletic, and softball was my life. I didn’t have balance anymore and I had this fear of getting hit and causing more damage. I did it for one more year then I gave it up. I learned I couldn’t ride a bike anymore, and that I couldn’t walk a straight line. Teachers would often ask me if I was OK, because they’d see me walking all over the place and often thought there was something wrong.
The beginning of my freshman year was tough, because I’d still get teased and it was hard on my self esteem. I hadn’t accepted my disorder or myself. I would cry myself to sleep because I was still not used to the tinnitus and had insomnia. All I wanted to do was sleep, and to be able to look in the mirror without feeling ugly.
My relationship with my dad grew stronger, and he became one of my best friends. He was the only person that knew what I was going through, and we shared the same fears and insecurities. He’d always say to me, “Everything will be OK because we have each other, and together we can get through it.”
He’d also say that when he was diagnosed he had no one that understood what he was going through, but I had him. Not many in our family know how to sign, so I have seen how this disorder can cause isolation. It never got in my dad’s way though, every party and every event we were invited to, we were there. Even the ones we weren’t invited to, he’d say, “You know what, I’ll just act deaf and show up.”
That’s how my father faced life – head on and always with a sense of humor. He taught me never to give up and to always push forward overcoming every obstacle. It’s through his example that I began to take that same attitude, and stopped being a victim.
I had gamma knife radiation at the age of 15 to save my hearing in my right ear, and it worked. The radiation stabilized the tumor. I also had eye muscle surgery to correct my eye, but I could no longer move it. I had facial paralysis on the right side of my face as well. I think it was until my senior year of high school that I began to accept myself, and my disorder.
I began to feel comfortable in my own skin, and only surrounded myself with people that saw me for me and not my disorder. I also met someone very special to me my senior year, Rodrigo Fuentes. We instantly became best friends, and it wasn’t until the end of our first semester in college that we started dating. He made me feel healthy. When I was with him I forgot I was sick and all the fears I carried about my disorder just disappeared. I had found someone I could be myself with, and he made me feel beautiful. He saw me and not what this disorder has done to me, and that’s how he made me feel not only healthy but for the first time in a long time, beautiful.
It was then that I learned to look in the mirror again and liked what was staring back at me.
It was then that for the first time I looked forward to the future, because whenever I thought of the future I would just think about what my disorder would take me. When I thought of the future then, I thought about where LIFE would lead me.
Hearing loss began and I got my first hearing aide at the age of 19, but nonetheless I remained stable and that was good enough for me. I had radiation therapy on my lower spine for three tumors. I would go to class, get out, and drive to the radiation center for treatment. I kept going to school with my end goal in mind. My dad would often sit with me and remind me not to put too much on my shoulders. I’d laugh and say, “You were a single dad, worked full-time, and would drive 4 hours to go to school during the weekend to work on your masters degree, so shut it.” Most times he’d laugh and say, “Yes, but I’m me, you’re not.”
And then the times he was really serious he’d say, “Yeah, and it almost killed me.”
I was having a hard time getting accepted to a college in California, so I decided to apply to Arizona State University. When I got in, I just told my dad, “I got in, I’m moving.” He of course freaked out, but was also supportive. Rodrigo decided to come with me, which made my dad a lot more calm since I would no longer be moving by myself to a new city. I loved my classes and was looking forward to getting my degree at ASU. One time my dad came to visit with his fiancée for a family weekend and he was thrilled with my choices. Toward the end of the semester, my dad started getting involved in the NF support groups on Facebook, and told me to join. He’d say, “Interact with them,” and I would reply back that, “I don’t need to, I have you and that’s enough.”
A short time after that conversation, my dad was killed by a drunk driver a week before his 47th birthday while driving to surprise his fiancée.
I lost my best friend, my NF fighting companion, my inspiration, my hero, my father. My everything.
His brave, courageous battle was cut short by something that could have been prevented, and that continues to piss me off today.
I am the oldest and everything fell on my shoulders, but I finished the semester. I did two more college semesters before I eventually dropped out. I no longer had medical insurance, and they took away my benefits, so I basically had no way of knowing if my tumors were stable. It was a dark time for me, and through therapy and Rodrigo’s support, I pushed on. I owe Rodrigo my life, because a big part of me felt I could not continue living in a world where my father no longer existed and I could not fight this disorder without him. Eventually, I did what my dad told me to do, and got involved in the support groups. I didn’t feel alone anymore, and that I could continue this fight because even though my dad was no longer there to fight with me, others were.
Rodrigo proposed over 4th of July weekend in 2014, when we spread my dad’s ashes. It was as if my dad was there, and it was the perfect day.
Then November of the same year, I found out that despite having Ovarian Polycystic Syndrome, I was pregnant. Our little boy arrived July 19, with red hair, a tooth, and two birthmarks. We named him Roderick Mikael, after Rodrigo and my dad. He was a healthy baby but as time passed we noticed his eyelid drooped and he had the birthmarks, so we were to a genetic counselor.
At five months old, our son was diagnosed with Neurofibromatosis Type 2. We knew there was a possibility that he would inherit the disorder, and when I was pregnant I made the decision that I would not allow myself to feel guilty or sad, and that I would be strong for my son. He currently does not have tumor growth, and will not start his yearly MRIs until the age of 5, or possibly later. It all depends on whether or not there are signs of growth, and that will lead the neurologist on making a decision about the MRIs.
Last October (2016), we participated in our first NF Walk here in Phoenix. Driving there was emotional for me because I wished my dad could have been there with us. It was the first time I would interact with people with Neurofibromatosis other than my dad.
It was just an amazing, emotional experience.
Roderick had a blast. There were moments where I cried while I spoke to other parents and other fighters. I told one of the mothers that I wish I had the interacts with others when I was growing up, or that my dad would have had the support of other parents, because I know even though we had each other, we felt alone. We made the decision as a family that we would be involved in the NF community as much as we could so that our son would never feel alone, and that he would know there are others who fight the same disorder as he does. It was there that we learned about Cupid’s Undie Run.
Why do we fundraise?
We fundraise so that our son and others who suffer from this disorder can have a better chance at life. I think what helps me is I never get tired of letting people know what their donations could mean for my family, for my son, and others with NF. Don’t get discouraged if you feel like you aren’t being heard, keep trying, because there is someone out there listening. For me, it’s just seeing the support and love we receive from others that counts the most.
Neurofibromatosis can be isolating, and to see people want to help so that people like my dad, my son, or even myself have a better qualify of life, is amazing. So my advice is – don’t get discouraged of getting the message out there, because us NFers feel discouraged at least once a day with life, but we keep fighting and we never give up.
Why Cupid’s Undie Run?
I run for my dad, who taught me that there is no obstacle, nor battle great enough that can stand in the way of your dreams. I run for my son, who teaches me every day that life is meant to be lived in the now because we will never have these moments again. Most importantly, because I want my son to know the same thing I knew my dad did for me, that there is not a thing in this world I would not do for him, because my love for him is infinite. Lastly, I run for myself, because it’s on me to push myself and never give up. I have to fight my battle, and it’s how I fight it that matters, not the outcome. For everyone that suffers from Neurofibromatosis, or that has a child with Neurofibromatosis, you are not alone, I stand and fight with you.
Written by Chyenne Fuentes
Photography by Valarie Waldvogel
You can make a difference for Chyenne and her family. Please consider making a small donation to Cupid Charities and together, we will #EndNF