CTF’s brand new live stream and gaming campaign, Connect2Fight, is off to a great start! May Awareness month was reason enough to motivate several content creators and NF Heroes to connect their audiences in the fight to End NF and raise funds for NF research. We met Sarah Sappington earlier this year when she reached out asking how she could further engage as a CTF volunteer.
Sarah shared her story through a video campaign on social media, which she called Brave the Shave for NF. She let her audience know that she had decided to shave her head and donate her long, beautiful blond locks to an organization that makes wigs and gives them to children with hair loss. She professed this in the name of making others aware of the NF cause and set a goal of $500 to raise. She surpassed her goal in a mere three hours and raised over $2,700 overall. Sarah’s story, in her own words:
April 1, 2018, it was Easter, otherwise a normal day, however when I woke and tried to stand, I fell to the floor. The room was spinning. I tried again and fell right back down. I knew something wasn’t right so I crawled my way to find help. I had dizzy spells for many years that my family didn’t investigate so my thought was, oh it’ll pass, this just happens sometimes. But that day I couldn’t see well and my hearing sounded muffled to the point that I couldn’t make out any words. It seemed more serious than any dizzy spell I’d had before. I went to the doctor the following day and he scheduled an MRI to be done that day. That’s when they found bilateral vestibular Schwannomas. They think my right tumor just grew overnight and hit a nerve that irritated my system. I had been symptomatic for years so to finally have a diagnosis was honestly really comforting, because I’d always just been told that I’m making it up, or doing it for attention. It was a scary diagnosis, but somehow, I felt hopeful about it all.
All of this occurred a month and a half before I was set to graduate college. I wasn’t able to sit-up on my own, walk, go to the bathroom, shower on my own. My world had been completely turned upside down and all of the sudden I was 100% dependent on others to take care of me. That was hard to learn and to be okay with. I was unable sit up in bed so finishing schoolwork and homework was out of the question. Also, reading made me extremely dizzy. The doctors thought I might not be able to graduate, but thankfully my professors were wonderful and they worked so willingly with me so that in May, I was able to “walk” at graduation. Literally walking at graduation was a huge deal for me. Thankfully I have amazing friends in my department, and they held me up on either side to help me cross the stage and receive my diploma. It is a special memory for me to look back on.
That fall I started vestibular rehab to recalibrate my brain, and learn how to balance again. After just 5 weeks, my doctors were baffled because I had achieved better balance than a normal person, without tumors, would have. God has truly worked in my life over and over again with my diagnosis and I’m so thankful to share it as a part of my testimony.
My diagnosis has caused many difficulties such as extremely sensitive hearing, constant dizziness (but you’d never know), and trouble with reading, and learning. Working a full-time job is not something I feel my body can handle quite yet. Being unable to work has given me more time to focus on things that truly interest me, and my husband Will, is amazing. He supports our little family of fur babies.
Will and I met years before my diagnosis, so he got to witness how life changing it was for me. He didn’t skip a beat once we FINALLY started dating after 4 years of friendship and were engaged and married. He’s been such a gift from God to me because he supports me in all ways and has never made me feel less than for being too tired to do anything some days.
I’ve only been diagnosed for two years but I’ve already seen how much it has impacted my life in all ways. I’ve been to many doctors, some who just want to throw steroids at me, and others who truly want what’s best for me. So NF2 has been a journey that I know is far from over. 
Although my life looks nothing like what I thought it would, I wouldn’t change a thing. God gave me this body and this journey for a reason so I’m happy to use it as He needs me to.
I decided to do my Brave the Shave or NF campaign because I wanted to cut my hair. People have commented on how beautiful it is all my life. Which is so nice, but I realize that so much of feeling pretty or desired as a woman, rests in my hair. So I want to challenge that. Like all women, I have body issues. My body has changed in ways that are hard for me since getting diagnosed because of steroids and medications. So I want to really work on body positivity and find things that I love about myself that aren’t my hair. Focus on what matters and see myself as beautiful, not from what society says is beautiful, but from my own unique way in this body that has worked so hard for me. (My friend and photographer Abigail Derick chronicled my journey, and I shared more about these feelings on her blog.)
Then I realized this would be the perfect opportunity to shave my head (it’s a bucket list thing) and donate so much more hair to a child who needs it. It was NF Awareness month so I thought it would be the perfect opportunity to raise money! I’m excited to be donating my hair. I will miss it because it’s a part of me, but I’m also excited to challenge the idea of what makes me feel beautiful as a woman. All in all, there’s a lot happening in my life right now, but I’m so grateful for my friends and family who donated and shared my post. I’ve raised over four times the amount I was trying to raise!
Click here to watch Sarah cut her hair.
To get started on your own Connect2Fight campaign, please reach out to connect2fight@ctf.org.
