Alex Simpson recently celebrated turning 20, a moment her family once feared they would never see. Her parents had initially been reassured that their daughter was healthy, but a medical examination when Alex was about 2 months old revealed that she had hydranencephaly, an extremely rare condition in which much of the brain is absent and replaced by fluid.

Alex Simpson when she was still a baby, Photo Credit: WHAS11/Youtube
Doctors told the Simpson family that Alex had only a small amount of brain tissue remaining at the base of her skull. They also warned that she was unlikely to live beyond the age of 4.

Two decades later, Alex has defied those expectations.

Her father, Shawn Simpson, recalled how frightening those early years were for the family and credited their faith with helping them navigate the uncertainty surrounding their daughter’s condition.

The family’s description of Alex goes beyond the medical challenges she has faced. They believe she is highly responsive to the people around her and can sense emotions even when there are no obvious outward signs of what is happening.

Her younger brother, SJ, has spent years learning about hydranencephaly so he can better understand Alex and help care for her. At 14, he has developed his own observations about his sister’s ability to respond to the emotional atmosphere around her.

Alex Simpson when she was still a baby with her mother carrying her, Photo Credit: WHAS11/Youtube
According to SJ, Alex can seemingly recognize when someone nearby is upset or experiencing discomfort. He described moments when she appeared to respond to another person’s emotional or physical distress despite there being no conversation or obvious indication that anything was wrong.

Those experiences have shaped the way the family views Alex’s abilities.

Although Alex does not have the portions of the brain normally associated with vision and hearing, her loved ones believe she is far more aware of her surroundings than outsiders might assume.

For SJ, being Alex’s brother has also become an important part of his life. His efforts to research her condition have helped him learn more about the challenges she faces while giving him a better understanding of how to support her.