Two years ago, Alexis Shapiro was an active, normally growing third-grader enjoying all the activities of 10-year-olds. The diagnosis of craniopharyngioma, a rare form of benign brain tumor, changed all that.
The tumor, which grows near the pituitary gland, affects about one child in a million each year. Although it is not cancerous, surgery to remove it is not without risk.
In Alexis’ case, removal of the tumor damaged her hypothalamus, the tiny organ that helps control energy balance, appetite and weight. As a result, Alexis has hypothalamic obesity, a condition that leaves her constantly hungry.
Today, 12-year-old Alexis is 4-foot-7 and weighs 198 pounds.
“It just keeps going up and up,” Alexis’ mother, Jenny Shapiro, told NBC News.
Despite a diet restricted to 900-1,400 calories a day and extra exercise, Alexis gains two pounds every week. In addition, her extreme weight has contributed to other health problems, including a recent kidney infection and type 2 diabetes, which requires nightly insulin injections.
Her mental health as suffered too. Alexis, who wears a woman’s size 1X or 2X, is now home-schooled because of comments from other kids. She no longer has friends and, according to her mother, told her psychologist that she wanted to die.
Alexis’ doctors say gastric bypass surgery will help her by reducing her stomach size and altering her brain’s reaction to fullness. However, the surgery comes with a $50,000 price tag and the family’s health insurance carrier won’t pay for the weight loss procedure because Alexis is under 18 and has not achieved full bone growth.
In an email to NBC News, a spokesman for TRICARE and Humana Military, which provides the family’s health insurance, wrote, “We have an appeals process in place specifically designed to give our medical professionals the opportunity to examine the details of any special cases when coverage is denied.”
However, because an appeal can take months with no guarantees that the surgery will be approved, Alexis’ mother turned to GoFundMe.com to start a fund-raising campaign aimed at raising the $50,000 needed to pay for Alexis’ surgery.
At this writing, Alexis’ GoFundMe page has more than met its goal.
In her Dec. 29 post, Jenny Shapiro wrote, “Oh my!!! I can't believe this! We are so grateful. I am going to contact the hospital on Monday. To find out if this will cover all the costs. Thank you to everyone who cares.”