A 20-year-old woman who was born without a brain is a living miracle after doctors said she wouldn't make it past four.
Alex Simpson was expected to live just a few short years. Diagnosed with hydranencephaly, an extremely rare brain condition, her prognosis wasn't good from the start.
But this November, her family marked a milestone they were once told would be impossible — her 20th birthday.
A Devastating Diagnosis at Just Two Months Old
Born a seemingly healthy baby, everything changed two months after Alex came into the world.
A check-up revealed she had hydranencephaly, a birth defect where parts of the brain — specifically the cerebral hemispheres — are missing.
According to the Cleveland Clinic, the condition occurs in just one in 5,000 to one in 10,000 pregnancies. In Alex’s case, what little brain tissue she has amounts to “just a pinky’s worth… in the back of her cerebellum,” her father Shawn Simpson said.
Doctors painted a bleak picture, warning the Simpson family that Alex likely wouldn’t live beyond the age of four.
“Faith… Is Really What Kept Us Alive”
Despite the odds, Alex has defied every medical expectation. Her family says the key to her survival has been something medicine can’t always explain.
“Twenty years ago we were scared, but faith, I think, is really what kept us alive,” Shawn told KETV.
When asked how Alex managed to reach her 20th birthday, her parents had a simple answer: “love.”
Though Alex can’t see or hear, her family is convinced that she experiences and responds to the world in ways many don’t understand.
“You can see that when I went up there and talked to her a little bit ago, she was looking for me,” said her father.
Her younger brother, 14-year-old SJ, shared a powerful observation: “Say somebody’s stressed around her. Nothing will even happen — it could be completely silent — but Alex will know. She’ll feel something.”
He added: “Like, if my grandma’s hurting, in her back, she’ll radiate off of it – it’s crazy.”
Proud of his sister, SJ has taken the time to study her condition, committed to understanding what she needs and how best to support her.
“Terrible Not Knowing If She’d Make It Through the Night”
Alex’s early years were filled with fear and sleepless nights for her mother, Lorena Simpson.
“It was terrible to not know if she was going to make it through the night,” Lorena told the Daily Mail in 2016 when Alex turned 10.
“So for three years, I would sleep with her, making sure that she’s breathing, making sure that she’s moving. Every night I was praying and praying she’d make it through.”
Beyond the medical marvel, the Simpsons are on a mission to challenge how society views people with profound disabilities.
“A lot of people think she’s just a vegetable, and we have heard tons of negative comments,” said Shawn.
“It’s one of our missions in life to let people know that just because people are disabled doesn’t mean they don’t have a right to enjoy life as much as possible.”