‘She’s a fighter’: KETV reconnects with inspiring family whose daughter was born with nearly no brain
By Samantha Pastorino
Click here for updates on this story
OMAHA, Neb. (KETV) — Nearly 10 years ago, KETV brought viewers the story of the Simpson family.
The family’s daughter, Alex, is extremely unique; she was born with hydranencephaly, a rare condition with an extremely low survival rate.
“(Hydranencephaly) means that her brain is not there, not half a brain, her whole brain. 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,” Alex’s dad, Shawn Simpson, said.
Now, almost a decade later, we’re back as the family celebrates another milestone birthday for their daughter.
When asked how their daughter got here, when doctors initially told them she wouldn’t live past 4 years old, parents Lorena and Shawn Simpson answered “love.”
Lorena and Shawn say Alex has grown calmer and healthier over the years.
While the parts of Alex’s brain that see and hear aren’t there, Alex’s siblings and parents say they see and know her personality.
“When I went up there and talked to her a little bit ago, she was looking for me,” Shawn said.
That’s what Alex’s younger brother, SJ, says, too.
He was too young to interview with us back in 2016, but now he’s eager to share how proud he is to be Alex’s brother.
“When people ask about my family, the first thing I start with is Alex, my sister,” SJ said.
The 14-year-old says he researches Alex’s condition often to be as supportive as possible to Alex and his parents.
“Say somebody’s stressed around her, nothing will even happen, it could be completely silent, but Alex will know; she’ll feel something. If my grandma is hurting in her back, Alex will radiate off of it. It’s crazy,” SJ said.
The Simpsons say Alex’s spirit inspires them all.
“Twenty years ago, we were scared. Faith is what really kept us alive,” the family said.
Alex celebrated her 20th birthday on Nov. 4.
This story was provided to CNN Wire by an affiliate partner and does not contain original CNN reporting.
Please note: This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.