While discussing yet another medical problem tied to my son’s Lowe syndrome (LS) at the pediatrician’s office, I proclaimed my son had to be the most unlucky child. The pediatrician said “You may be unlucky, your son is just plugging along”. He was right, my son only knew life with LS and the resilience of boys living with LS is really quite remarkable. When my son became an adult, a parent of a young boy living with LS told me that seeing my son and his life experiences gave her hope. I soon realized that hope was his superpower!
Hope is so powerful. It means other boys diagnosed with LS may graduate from high school, may earn a varsity letter, may take a date to Prom, and may work in the community. Even with complex medical issues, these boys impact the lives of others in ways as unique as their journey with Lowe syndrome. This exhibit reveals the superpower each unique and joyful boy would chose as their own.