A Nebraska family is celebrating a milestone they once believed was impossible: their daughter’s 20th birthday.
Alex Simpson of Omaha was born with hydranencephaly, a rare neurological condition, her parents Shawn and Lorena Simpson explained to local outlet KETV News.
“[Hydranencephaly] means that her brain is not there,” Shawn said. “Technically, she has about half the size of my pinky finger of her cerebellum in the back part of her brain, but that’s all that’s there.”
Doctors told the couple their daughter likely would not survive past age 4 — a prognosis that has been surpassed by more than a decade.
When asked why they believe Alex has lived so far beyond expectations, both parents credited one thing: “love.”
Although Alex cannot see or hear, Shawn and Lorena say she responds to their presence.
“You can see that when I went up there and talked to her a little bit ago, she was looking for me,” Shawn said, describing her subtle eye movements.
He added that their “faith” helped carry them through the diagnosis and the fears that came with it. “Twenty years ago, we were scared but faith, I think, is really what kept us alive.”
Lorena echoed the sentiment, calling her daughter “a fighter.”
Alex’s younger brother, SJ, now 14, shared his admiration and love for her. “When people ask about my family, the first thing I start with is Alex, my disabled sister,” he said.
He believes she can sense emotional shifts around her. “Say somebody’s stressed around her — nothing will even happen — it could be completely silent, but Alex will know. She’ll feel something,” he said.
According to the Cleveland Clinic, hydranencephaly occurs in an estimated one in 5,000 to one in 10,000 pregnancies and is typically fatal within the first year of life.
