My teenage son has Okur-Chung neurodevelopmental syndrome (OCNDS), an ultra-rare genetic disorder caused by a mutation on the CSNK2A1 gene, which creates the CK2 protein present in every cell in the body. Each patient is affected differently, but common symptoms include autism, intellectual disabilities, short stature, low muscle tone, and speech delay. Last year, he developed autoimmune encephalitis, which resulted in a two-month hospitalization. He is currently undergoing treatment that includes regular intravenous immunoglobulin infusions and a transplant rejection medication that severely suppresses the immune system.
Ever since the Covid pandemic began, my family has completely changed our lives to protect his health. I work remotely, foregoing work travel and in-person meetings to limit the chance of catching Covid or any other virus. My husband left the workforce to become a stay-at-home parent and homeschool our son to limit his exposure to illness. When we venture out to places like the local library, museum, or farm near our house, we stay safe by masking and social distancing.
