National News

Family Finds Purpose, Joy Caring For Daughter With Rare Condition 

PROSPECT HEIGHTS — Mention the name Alex Simpson of Omaha, Nebraska, on social media, and behold a forum of people debating for and against abortion and euthanasia 

It began in mid-November, when local news channels reported that Alex had just celebrated her 20th birthday — a miracle, according to her parents, given that she wasn’t expected to live longer than a year. 

Alex has a condition called hydranencephaly, which means she was born without the “cerebral hemispheres” of the human brain. These are the two large lobes that form most of the organ, and they control cognitive functions, sensory processing, and voluntary movements.  

She can’t speak or think, and she needs 24-hour care. 

“Prime example of why abortions should NOT be banned,” wrote one person whose comments received 2,262 likes and 59 replies on Instagram. “I’d never allow my child to live with such a poor quality of life … That’s cruel, [in my opinion].” 

“There’s no life in that body,” wrote another person. “There’s no miracle whatsoever. That’s just selfish people not letting go of a void.” 

Alex’s parents, Lorena and Shawn Simpson, don’t respond to the comments, but they shared their family’s story Dec. 10 for The Tablet and Currents News with Alex sitting between them in a wheelchair. 

They belong to the Church of Jesus Christ of Latter-day Saints, and they are against abortion and euthanasia. 

Alex Simpson needs round-the-clock care, which her parents (shown here) and siblings lovingly provide at their home in Omaha. (Photo: Courtesy of Currents News)

“We didn’t know she was going to be born like that,” Lorena said. “Even if I knew, I would not choose an abortion.” 

The Cleveland Clinic reports that hydranencephaly occurs in one of every 5,000 to 10,000 pregnancies. 

Some families choose abortion because this congenital disability “is usually fatal within the first year of life,” according to the clinic’s website. 

Alex’s condition was not discovered until she was 2 months old, which is when that typically happens, according to the Cleveland Clinic. Her skull was properly formed, and brain fluid filled the areas that should have held the cerebral hemispheres. 

Still, as she got older, she has developed ways to communicate “physically,” Shawn said. 

“If she has any pain, she will show a grimace,” he explained. “Or you can see her eyes getting wide, like, ‘Oh, something’s going on here.’ 

“But when we kiss her, she has got a huge cheese-eating grin on her face. That’s a big moment for us because it doesn’t happen very often. But, when it does, it’s like Christmas Day.” 

The Simpsons chose to keep her at home. Subsequently, they learned the skills necessary to provide the same quality of care she would receive in a specialized facility. 

Some social media commentators suggested the family keep Alex at home to qualify for disability checks. The Simpsons shrugged off the claim. 

“We have Medicaid for her, obviously, but they just pay for her supplies, and they don’t always pay for everything,” said Shawn, a life insurance salesman. “So, stuff still comes out of our pockets.” 

The Simpsons have two other children. Marijose is older than Alex and married. Shawn Jr. Is a teenager in high school. Shawn said people often comment on how difficult it must be for the family to care for Alex. 

“Sometimes they say, ‘Man, you guys have a tough life,’ ” he said. “But, no, we don’t. We just learn to adapt.” 

“If I had the choice, obviously, I would want her to be born with a brain. Who wouldn’t? But now that we have lived the life that we live, I wouldn’t change it for the world.” 

Lorena said she has no problem telling people facing complicated pregnancies to keep their children. 

“Take the risk,” she said. “I’m never going to say that it’s easy. It sometimes is harder than you think. But sometimes people ask me, ‘How do you do this?’ And I say, the Heavenly Father helps me to go through all of this. 

“I’m grateful that he chose me to have one of his angels on this earth, and to take care of her for him.” 

While some social media participants criticize the Simpson family, many more see the world just as they do. 

“All we know is that life found a way despite some steep hardship,” responded one person. “There is opportunity for learning here.” 

Another person posted, “She might not have a brain, but she has a soul and a purpose. God does miracles every day, and she’s one of them.”