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Once obese but starving: Girl with rare disorder suffers health setback

The girl who captured attention after a disorder left her constantly hungry and morbidly obese has learned her brain tumor has returned.
/ Source: TODAY

Alexis Shapiro — the young Texas girl who captured national attention after a rare disorder left her constantly hungry and morbidly obese — has learned the brain tumor that triggered the ordeal has grown back.

Doctors discovered its return during a routine MRI, her mother Jenny Shapiro announced on Facebook this week.

“Just when we thought things were settling down,” Shapiro wrote.

Upon finding out the news, Alexis “pulled her shirt up over her mouth, eyes watering, and said, 'I don't want to gain weight again.' The complication of hypothalamic obesity has been her biggest struggle," Shapiro told People. The tumor is now affecting the girl’s eyesight, she added.

As NBC News first reported in 2013, Alexis was in elementary school when she was diagnosed with a craniopharyngioma, a benign brain tumor. The girl underwent successful surgery to remove it in 2011, but she developed hypothalamic obesity, a rare condition caused by damage to the hypothalamus, an area of the brain that helps control appetite.

Alexis never felt full after meals and kept eating despite the family’s efforts to stop her, Shapiro wrote in an essay for TODAY last year. At 4-foot-7, the girl’s weight eventually topped 200 pounds

“She could only stand for a couple for minutes and after that, she felt like her legs gave out on her,” Shapiro recalled.

In March 2013, after a struggle with the family’s health insurance company, Alexis finally underwent gastric sleeve weight-loss surgery at Cincinnati Children’s Hospital Medical Center that reduced the size of her stomach by 80 percent.

Alexis lost weight, but this summer, her family announced her fight against hypothalamic obesity wasn’t over. She underwent a gastric bypass in August.

"We are thankful that the sleeve surgery was a success and truly saved Alexis' life. We knew that she would possibly still need the bypass," her mom wrote on Facebook. "Hypothalamic obesity is such a BEAST. I hate it."

Now, with the brain tumor growing back, the family is bracing for more doctors’ appointments and medical procedures.

“We have to keep fighting,” Shapiro told People. “I have to show Alexis it's okay to be scared but you can't give up – and you definitely can't give up hope!"

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