Alex was diagnosed with hydranencephaly, a rare neurological condition that affects the way a baby’s brain forms before birth, leaving doctors unsure of how long she might live.
Doctors gave her parents, Shawn and Lorena Simpson, an incredibly grim outlook. They were told their daughter would likely not live to see her fifth birthday, and that each day they had with her would be a gift.
Reflecting on the journey, Shawn shared: “Twenty years ago we were scared, but faith, I think, is really what kept us alive.”
Her younger brother, SJ, agrees. He described how deeply connected Alex seems to be with the emotions of those around her, saying: “Say somebody’s stressed around her. Nothing will even happen — it could be completely silent — but Alex will know. She’ll feel something.”

“So for three years, I would sleep with her, making sure that she’s breathing, making sure that she’s moving.”
He said: “A lot of people think she’s just a vegetable, and we have heard tons of negative comments.”