Nobody expected Alex Simpson to live past her fourth or fifth birthday.
But against all odds, the young Nebraska woman who was born without most of her brain celebrated her 20th birthday in the company of her loved ones.
“Miracles still happen,” her family said, proudly sharing her story with the world.
Against all odds, a Nebraska woman who was born without a brain celebrated her 20th birthday with her family
Alex Simpson was born to an Omaha family on November 4, 2005.
Her parents, Lorena and Shawn Simpson, still remember the day the doctor had a life-changing conversation with them about their little girl.
“Doctor Davey came in with his nurses and said, ‘You guys need to sit down. This is pretty serious,’” the parents recalled.
The family was told their daughter was born with hydranencephaly, a rare condition in which the brain’s cerebral hemispheres are missing.
One in 5,000 to 1 in 10,000 pregnancies are affected by hydranencephaly, and most babies with this condition pass away before their first birthday, according to the Cleveland Clinic.
Alex Simpson was born with parts of her brain missing and was diagnosed with hydranencephaly
About two months after Alex’s birth, Lorena and Shawn were told by doctors that a good portion of her brain was missing.
“[Hydranencephaly] means that her brain is not there,” Shawn told KETV this month. “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.”
After doctors initially predicted that Alex wouldn’t live for more than a few months, Lorena and Shawn spent the first six months thinking she could pass away at any moment.
“Those six months, every day and night thinking, ‘This is the day, today will be the day,’” Lorena previously told KETV.
To everyone’s surprise, Alex did make it to her first birthday.
With time, the couple learned to take things one day at a time, even as doctors said she wouldn’t make it past her fourth or fifth birthday. But Alex did. And then came her sixth, her tenth, her fifteenth, and, most recently, her twentieth birthday, which the family celebrated on November 4 this year.
Shawn and Lorena both believe it was “love” that helped Alex live way past what doctors expected.
Alex’s family believes it was “love” that helped her live way past what doctors expected
“Twenty years ago, we were scared, but faith, I think, is really what kept us alive,” the father told the outlet this month.
“She’s a fighter,” added Lorena.
Alex’s brain was missing the parts responsible for seeing and hearing, but her family believes she can recognize their presence and pick up on their moods.
“You can see that when I went up there and talked to her a little bit ago, she was looking for me,” Shawn told the outlet this month.
Alex is an older sister to 14-year-old brother SJ.
“When people ask about my family, the first thing I start with is Alex, my disabled sister,” the teen told the outlet.
SJ also believes Alex can sense when they are around her and possibly even know how they are feeling.
“Say somebody’s stressed around her — nothing will even happen — it could be completely silent, but Alex will know. She’ll feel something,” said the younger brother.
“When people ask about my family, the first thing I start with is Alex, my disabled sister,” said Alex’s younger brother
Alex has grown calmer and healthier over the years.
Back when Alex was 10 years old, the Simpsons couple gave an interview and spoke about how she was able to maintain some awareness about her surroundings and the people around her.
“She knows her mom and dad, her little brother,” her father said at the time. “She knows when bad things are going on; she will cry or have a sad face.”
Image credits: WHAS11
Her family expressed how much they are in love with the person Alex is.
“I would not take Alex any other way,” Shawn told KETV in 2016. “We have learned to love her the way she is. She has blessed our family so much.”
“A true miracle and God bless her with another year of life,” one commented online
