Alexis Shapiro, Girl with Condition Causing Insatiable Hunger, Loses Nearly 60 Lbs.
Alexis Shapiro is showing off her new wardrobe. After more than a year of being forced to wear men’s XXL t-shirts, Alexis, now 13, can shop again at her favorite tween store, Justice.
“This shirt glows in the dark,” she tells PEOPLE proudly. “This one glitters. I’m saving it for picture day.”
It’s hard to believe this is the same girl who once asked her mom to take down all of the family photos in the house because she couldn’t bear to look at herself. An operation in 2011 to remove a rare brain tumor damaged her hypothalamus and led to uncontrollable weight gain. By January 2014, Alexis (who weighed 52 lbs. at the time of her surgery) was carrying 203 lbs. on her 4-foot-7-inch frame.
Her parents tried everything they could to help her lose weight, from limiting her calories to going low-carb.
“No matter what she did for diet or exercise, Alexis gained 1 to 2 lbs. a week,” says her mom Jenny Shapiro, 35.
She developed type-2 diabetes and her liver and pancreas were under tremendous stress. Desperate to save their daughter’s life, Shapiro and her husband Ian, 35 researched gastric bypass surgery and started a crowd funding campaign when the insurance company refused to pay for treatment. (It later reversed its decision.)
Alexis had a sleeve gastrectomy on March 21, 2014 at Cincinnati Children’s Hospital Medical Center, after the surgical team led by Thomas H. Inge, found her liver to be too large for the original bypass plan. But the sleeve was a success.
“She has done remarkably well since the operation,” Inge says. “The stomach surgery gave her the ability to counteract powerful weight gain signals, and we have seen major improvements in her overall health.”
Since March, Alexis has lost nearly 60 lbs. by eating small, frequent, protein-heavy meals. Her type-2 diabetes went into complete remission. No longer in pain, she can play with her siblings Kayley, 10 and Ethan, 8. Everyday tasks are once again doable, like fitting in the back seat of the car, washing herself and getting dressed on her own.
“I feel more active and more talkative,” she says. “I walk laps every day. I want to do a 5K!”
Her parents are relieved after so much struggling.
“I m grateful every day to see Alexis feeling much more comfortable and emotionally stable,” her mom wrote in a blog post for Cincinnati Children’s Hospital. “Her confidence is emerging and I love every moment of it!”
Alexis has also returned to public school after a year of homeschooling. She even joined an after-school exercise group.
“Out of all the clubs she could have joined,” her mom says with disbelief, “she chose one that’s physically active.”
Still, things aren’t perfect for the tween. The tumor and subsequent surgery damaged her pituitary gland, leaving her with adrenal insufficiency, which means the body cannot calm itself down when it faces potential threats or stressors. Alexis will need hormone replacement therapy for the rest of her life.
But she is starting to take ownership of her condition and earning her mom’s trust – and Shapiro couldn’t be more proud.
“If the nutritionist says something, she pretty much does it by the book,” she says. “She has put so much effort into making the surgery successful.”
Shapiro continues to post updates about Alexis’s health on her Facebook page.
When I see how much better she feels and how much she can do, I am just so thankful,” she says. “I really do think the surgery saved her life.”
For more from Alexis Shapiro and her family, pick up the latest issue of PEOPLE, on newsstands Friday