Aaliyah “Grace” is a beautiful, rambunctious, and joyful five-year-old who loves to swing, slide and build castles with kinetic sand. To know her is to love her, with her outgoing personality and constant smile. Grace’s journey began when she was adopted at four days old and coming home from the hospital with a strange birthmark on her stomach. As she grew, so did the mark. Her parents began asking the doctors what could be wrong and were repeatedly told it was just a birthmark and nothing to worry about. Finally, at ten months old and in part to the persistent questioning of her parents, Grace was sent to UNC’s Children’s Hospital for genetic testing. She was then diagnosed with neurofibromatosis (NF1), a genetic disorder that causes tumors to grow in the body on nerve endings. After more testing and consultation, it was determined that her “birthmark” was in fact a tumor, but benign.
At 22 months Grace’s first optic glioma was identified through an MRI. This form of brain cancer appeared in the form of tumors developing on her optic nerve and now her brain stem. At 23 months old, Grace began her first regimen of chemotherapy, which lasted 16 months. After seven months of remission and shortly before her fourth birthday, Grace had to start a new regimen of chemo which lasted for 18 months.
Grace has unfortunately had to restart chemo due to new tumors being identified. She has been fortunate, however, to be able to take an oral chemo drug, which means she does not need to go to the clinic for chemo, and just goes monthly for blood work. She has been granted a trip to Disney through Make-A-Wish, but due to side effects of the chemo, will not do the trip until her course of chemo is completed.
This beautiful princess has lost some vision in her left eye due to continued growth of the tumors. Nevertheless, she is doing well and continues to make friends with all who cross her path!! Her strength perseveres and sweet spirit is awe inspiring, despite the continual battle and side effects of NF1, childhood cancer, chemotherapy, autism, and ADHD.
Grace is excited to start school in the fall and is counting down the days. She has visits with family and friends planned through the summer to keep her busy, but has already picked out a new back pack and lunch box and can’t wait to put them to use.
Grace has been on chemotherapy most of her life and deals with many struggles daily, however, she radiates love and joy even on her worst days. She loves interacting with the volunteers, other patients and staff at her weekly chemotherapy visits, playing with her dog, Elsa, and cat, Oliver, being tickled by her older brother, and singing and dancing and being the life of the party. She never meets a stranger and reminds all that have the pleasure to know her that each obstacle faced is manageable by placing our faith over our fears.