Alexis, 12, has gained 150 pounds in two years, and she's still gaining weight — at the rate of two pounds per week.
When Alexis was nine years old, she was a happy and contented 52 pounds. All that changed, however, when she started suffering from severe headaches, and her growth rate slowed.
An MRI showed a benign brain tumor, or craniopharyngioma, had developed in the central part of Alexis' brain, close to the hypothalamus and pituitary gland. The hypothalamus regulates appetite, and when damaged, the hormone that tells your brain when you are full can no longer interact with receptors on the hypothalamus.
Since Alexis' brain doesn't receive those fullness signals, it "thinks" her body is starving. In response, Alexis developed hypothalamic obesity, a condition where her body continually gains weight no matter what diet or exercise changes she makes.
Gastric bypass surgery could help stop Alexis' unrelenting weight gain, Dr. Thomas H. Inge, a pediatric surgery expert at the Cincinnati Children's Hospital Medical Center, explains. The surgery, much like Alexis' condition, has a biochemical basis for affecting the part of the brain that controls hunger and the part of the gut that controls the hormones that "talk" to the brain. "It really is a situation of fighting fire with fire, in a sense, because surgery can counteract those exact signals that are telling Alexis, for instance, to gain two pounds a week," Dr. Inge says.
But Alexis and her family faced another challenge when their insurance carrier denied coverage for the bypass. And Alexis' mom, Jenny, says her daughter doesn't understand why her body is doing the opposite of what she wants it to do.
Jenny says her biggest fear for her daughter is that she will continue to gain weight, and lose her life. "She goes to counseling, and she's told them she doesn't want to live. She doesn't want to live this life," Jenny explains. "And as hard as it to hear your child say that, I understand. I know that she's in a lot of pain, and she suffers every day, so, I feel for her. But, of course, I don't want her to feel that way."
• Alexis and her family share the reasons why they wanted to tell their story.
UPDATE: Recently, Alexis had the weight loss surgery that could help save her life, but it didn’t go as expected.