In August 2018, Harper’s pediatrician referred her to the WashU Medicine Neurofibromatosis Clinic at St. Louis Children’s Hospital because Harper had physical symptoms that mimicked neurofibromatosis type 1 (NF1). However, Harper did not have enough indicators at that time to receive an NF1 diagnosis without a genetic test. Shortly after her first birthday, Harper began to regress in speech and was delayed in many motor skills. She was not gaining weight and was overly tired, sleeping 14-16 hours a day. This was an area of concern and in February 2019, her medical team completed an MRI and found four tumors in her brain: one on each optic pathway nerve, one on her brain stem, and one deep in the center of her brain. This confirmed her NF1 diagnosis. Doctors conducted a brain biopsy in April 2019. Results showed the tumor was active and growing, which is not a typical finding for an NF1 tumor. Her care team at Siteman Kids at St. Louis Children’s Hospital determined chemotherapy treatments would be used to try and shrink the tumors and stop them from growing since they could not safely be removed. Harper received one treatment per week for 10 weeks. She then completed a four week on-two week off rotation for the next year. Her chemotherapy concluded in June 2020. Harper continues to visit St. Louis Children’s for monitoring every six months as well as for visits to Ophthalmology, Neurology, the NF Clinic, Endocrinology, and Cardiology. In February 2021, Harper had two emergency brain surgeries, had two more again in February 2023, and another in June 2025. Since then, Harper has also been diagnosed with a seizure disorder. Harper wears glasses to help with her vision loss and completes speech, physical, and occupational therapy each week due to low muscle tone and extreme fatigue. She battles dyslexia, visits her heart specialist to monitor her mild heart defect, is monitored by a neurology team, and is checked for new tumor growth. Even with her obstacles, Harper proves she is one tough little girl. She amazes her family every day. Harper is a true fighter who faces every challenge with a smile. Her positivity and persistence are an inspiration to everyone around her.
