When Alex Simpson was born in Nebraska, her parents never imagined the journey ahead. At just two months old, doctors diagnosed her with hydranencephaly, a rare condition in which much of the brain’s cerebral hemispheres fail to develop. Her parents were told she might not live beyond early childhood. Yet Alex has now celebrated her 20th birthday, far exceeding the prognosis her family was given.
Although Alex cannot see or hear because of her condition, her family says she can still sense and respond to the people around her. Her father, Shawn, recalled that when he spoke to her, she appeared to look for him. Her younger brother, SJ, has also said Alex seems to recognize when someone nearby is stressed, even when the environment is completely quiet. These moments have convinced her family that Alex experiences the world in ways that may not always be easy to understand.
Alex’s mother, Lorena, has described spending years sleeping beside her daughter, checking throughout the night to make sure she was breathing. The family also faced cruel comments from people who questioned Alex’s quality of life because of her disability. Her father has continued to emphasize that disability does not make a person’s life less valuable.
Today, Alex’s 20th birthday is a milestone her family once feared they would never see. Her story is one of love, resilience, and unexpected moments that have kept her family hopeful through the years. For them, Alex is not defined by what she cannot do, but by the connection, emotions, and responses she continues to share with the people who love her.