Thirteen-year-old Kylie is a fun loving eighth grader who has been through many obstacles in her life. When she was two months old, after the discovery of a plexiform neurofibroma and café au laits spots, Kylie was diagnosed with Neurofibromatosis Type 1.
Five eye surgeries later, she lost her left eye at the age of three. MRI’s revealed her tumor was still growing, which resulted in two more surgeries to “debulk” the plexiform on her head by the time she was five. She took a clinical trial chemotherapy that seemed to stabilize the growth of her tumors long enough for her to have a
break from surgeries. Currently, we are waiting on the FDA to approve a treatment that may help stabilize or even shrink her tumors.
Despite the challenges Kylie faces, she is unstoppable. She loves competitive cheerleading and playing the flute in her middle school band. Kylie thrives in school and enjoys reading her favorite books. She makes us laugh on a daily basis with her quirky personality and constant jokes. She has inspired many people participate in many
events and make a difference by promoting NF awareness.
With Great Appreciation from Kylie’s Mom & Family