I was diagnosed with NF2-related schwannomatosis entirely incidentally at age 16. I went to my optometrist for an annual eyeexam. She said my optic nerve looked slightly inflamed, so she referred me to a specialist. The specialist ordered MRIs of my brain and eyes to make sure nothing out of the ordinary was going on. It turns out my eyes were fine, but I had three brain tumors! My family and I were shocked. I was then referred to a pediatric neurologist for follow-up care. The neurologist diagnosed me with NF2-SWN as my scans showed that I had bilateral vestibular schwannomas (the hallmark of NF2-SWN) and a meningioma. I had genetic testing to confirm the results. The neurologist ordered an MRI of my spinal cord as there is potential for tumor growth there with NF2-SWN. The scans showed that I had a giant ependymoma inside of my thoracic spinal cord that was compressing it. It needed immediate surgical intervention to prevent permanent damage. 2 days later, I had surgery at Children’s Memorial Hermann in Houston. I was left with weakness, pain, fatigue, and loss of sensation in the lower half of my body.
In less than two months, I went from being a typical junior in high school to having a life-changing diagnosis and a spinal cord injury. I stayed in acute care for about a week, and then I was transferred to TIRR Memorial Hermann for in-patient rehabilitation. I stayed there for about five weeks doing intensive rehab to gain back what I had lost. I couldn’t even sit up by myself, let alone walk. Over those five weeks, I learned to walk again and do daily tasks. Once I was released from TIRR, I was in outpatient rehab for over a year to continue to gain back my motor skills.
As a result of my surgery, I lost sensation on my whole right side and proprioception on my left side from T8 down. I deal with pain and fatigue daily. I also go to MD Anderson Cancer Hospital in Houston for follow-up visits every six months to monitor tumor growth. I live scan to scan uncertain of what the future holds for me. However, this experience has taught me the value of living in the moment because you can never know what tomorrow may hold.
Before I was diagnosed, I planned to become a doctor and pursue a medical career. After my surgery and spinal cord injury, my fatigue and mobility issues made me realize that this was not the path for me. Instead, I chose to get involved in an undergraduate research lab where I discovered my passion for histology! Additionally, I had never really thought about having children before my diagnosis. Now that I have a 50% chance of passing this disease on, this is something I have to consider more in the future. Each time I have been asked to share my story has been a defining moment in my NF journey. Sharing my experience and knowing I am encouraging others makes me realize that all of my pain was not for nothing!
I am a junior Allied Health major at Texas A&M University in College Station. After I graduate in the fall of 2025, I want to pursue a career in histotechnology. My hobbies include reading, hanging out with my family, and buying overpriced coffee! I am also a volunteer puppy sitter for the national organization Guide Dogs for the Blind.
