Mike Terry, Deseret News
This is personal.
I should start with that disclaimer.
This is not about a stranger I met for an interview. This is a story about the girl across the street.
It's about Gentrie Hansen.
I knew her as a newborn and watched her grow up. She is girlhood personified. Happy. Friendly. Active. Pretty. Personable. When we pulled into the driveway or walked to the mailbox, she liked to shout out a greeting and conduct interviews across the street: How are you guys? What are you doing? Where are you going? This was between cartwheels in the grass.
And then I noticed she was absent. For months, we didn't see her. Well, it's winter, I told myself. Then spring came; still no Gentrie. I used to see her and her family at church on Sunday, but then we were assigned to another church building and lost that connection. Gone also was our pipeline for neighborhood news.
Quite by accident, we learned she is ill.
Surrounded by food, she is starving.
She hasn't eaten since Christmastime.
She is 14. She weighs 88 pounds — down from 112.
Gastroparesis, they call it. The best medical guess is that a virus attacked the nerves in her stomach. Anyway, her stomach no longer functions. When she was still trying to eat, she was vomiting a dozen times a day. She still vomits five or six times a day even though she no longer eats anything.
I saw her the other day for the first time in months, walking in the yard with her grandmother at her elbow. We sat on her front porch and talked. She was drawn and tired and thin.
She hasn't swallowed a bite of food or a sip of water in more than six months. She gets her food from a bag, via a pic line in her arm, 24 hours a day.
"I miss eating, a lot," she says.
She walks the aisles of the grocery store staring at food. She sees restaurants pass by as she is driven to another of her many hospital visits. She likes to watch cooking shows on cable during the day and takes notes for recipes.
"It breaks my heart," says Gentrie's Grandma Ann.
Food is everywhere but not for her. She has four siblings, including three large, athletic brothers who are all at least 6-foot-3, 220 pounds, the biggest being Braden, a 300-pound offensive tackle for the BYU football team. You think they don't knock back the food? It's torture for Gentrie. She cried when she saw the family eating.
So the Hansens closed their kitchen. During one of her hospital stays, she announced that she didn't want to go home because she didn't want to see and smell food.
"OK, we'll close the kitchen," mother Kathy announced. She placed a sign in the kitchen: KITCHEN CLOSED. The family eats sandwiches and rarely cooks because of the smell it produces.
Kathy says the family has become "closet eaters" — they step into a closet to snack so Gentrie can't see them.
It's torture. She can't eat, but she has constant hunger pains. Her stomach growls incessantly.
Gentrie's life has been put on hold. She hasn't attended school since December. She tried home schooling with a tutor, but she was so nauseated and fatigued that the plan was abandoned. So she reads and watches her cooking shows, usually with a heat pad held against her stomach.
"Sometimes I want to be done with it," she says. "I just want to say, 'I give up.' "
At one point she told her parents, "I just want to go live with Grandpa (who passed away). It's too hard here. I can't go to school. I can't be with friends. I don't really have a life."
She has been hospitalized eight times; she has been taken to the hospital about 40 times for various problems. She has met with all six pediatric gastrointestinal doctors in Utah. They all threw up their hands and sent her to see Dr. Carlo DeLorenzo, at Nationwide Children's Hospital in Columbus, Ohio. DeLorenzo is to gastroparesis what Kobe Bryant is to the jump shot.
DeLorenzo wants surgeons to insert a pacemaker into Gentrie's stomach; it shocks the stomach into action the same way it works on a heart.
Gentrie was scheduled to undergo the procedure tomorrow, but then last week the family learned they would be required to pay $100,000 up front for the device — and another $100,000 to $200,000 or more for the entire procedure.
Their insurance company — IHC SelectMed — has refused to cover it so far. The company considers it to be "experimental surgery" for anyone under the age of 18, even though clinical studies have been promising.
Surgeon Steven Tice told Kathy it has improved the condition of 100 percent of his under-18 patients.
The irony is that the company would probably save money in the long run because of the enormous expenses necessary to keep Gentrie alive now — hospitalizations, medications, doctor visits, etc.
So the procedure has been put off a month, while the family scrambles to find the money. Gentrie's grandmother is selling her motor home. The family is selling their speedboat. They are holding fundraisers. They have a website, fight4gen.com, to collect funds. They are desperate for help to save their girl.
Gentrie was devastated with the recent setback. She had been literally marking off the days until she could travel to Columbus for the surgery.
"She's been crying all day," said Kathy.
Doug Robinson's column runs on Tuesdays. Please send e-mail to firstname.lastname@example.org.
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