My Neurofibromatosis hero
Posted on March 13 2015
My daughter Emmersyn is a true Neurofibromatosis (NF) Hero. She was diagnosed with Neurofibromatosis type 1 when she was 20 months old. Neurofibromatosis is a genetic disorder that causes tumors to grow along nerves throughout the body. Tumors can develop anywhere at anytime. While most of these tumors are benign, they can lead to disfigurement, blindness, deafness, chronic pain, and cancer. NF can also cause bone abnormalities, learning disabilities, pseudoarthrosis, cancer, seizures, chronic headaches, and scoliosis. Emmersyn is now nearly 3 years old. She currently has three tumors, one in her back, her neck, and her right leg. We recently learned that she has a lesion in her brains stem which is being monitored by her neuro-oncology team. She lives in chronic pain, and she takes daily medications to manage her pain. Despite her adversities, she continues to thrive. She is full of happiness and a contagious zeal for life. She faces every new medical procedure, MRI, specialist appointment, and lab draw with a bravery and courage far greater than that of most toddlers. She refuses to let her struggles with NF define her life or harden her soul. She inspires others through her unconditional compassion and unbridled courage.