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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