Why Is My Life Like This?

Alexis Shapiro grips her mom Jenny’s arm as she slowly makes her way to a dock along the San Antonio River. “It hurts to walk,” says Alexis, a men’s XXL T-shirt stretched over her belly. Though she’s been begging for days to go on a boat ride near the family’s Cibolo, Texas, home, Alexis stops to whisper something into her mother’s ear.

Jenny, 34, doesn’t flinch as she looks her daughter straight in the eye to reassure her, “Don’t worry, this boat can hold a lot of people.” With that, the 203-lb. 12-year-old gingerly boards the vessel with her brother Ethan, 8, and Jenny. As Alexis waves to her dad, Ian, 34, and sister Kayley, 9, who have remained ashore, Ethan quietly asks his mom, “What if the life vest doesn’t fit her?”

On a rare day out, it’s clear that her family’s support is what truly keeps Alexis afloat. She suffers from hypothalamic obesity – an irreversible condition that causes insatiable hunger, a slowed metabolism and uncontrollable weight gain (see box). Alexis was diagnosed in 2011 when the removal of a rare brain tumor damaged her hypothalamus, which controls whether a person feels full or famished. Since then Alexis, who once weighed 52 lbs., has gained 151 lbs. in 2½ years. “Doctors tried to prepare us, but the change was rapid,” says Jenny. “She came out of surgery hungry.”

Though her family keeps her on a strict diet (once as little as 900 calories a day), Alexis adds 1 to 2 lbs. a week to her petite 4’7″ frame. “Look at all this hard work I put in,” Alexis would tell her parents. “Why does my belly still hurt? Why is the scale going up?” The answer: While she experiences ongoing hunger pains, her body is in constant starvation mode, and every day she stores more calories than she burns. “We tried different diets – Paleo, no carb. No matter what she did for diet or exercise, Alexis gained,” says Jenny. Nowadays for breakfast Alexis has oatmeal, and lunch can be a wrap with tuna, avocado and cucumber. For dinner the family usually has a lean protein like chicken. She’s also allowed two snacks of fruit or veggies a day. As for dessert Alexis enjoys yogurt with fruit, except on special occasions. “She will have a piece of cake or one cupcake,” says Jenny. “We still want her to be a kid.”

There is some hope: Thanks to an online crowd funding campaign that went viral, the Shapiros raised more than $78,000 to help pay for gastric bypass surgery, which will reduce the size of Alexis’s stomach by 80 percent and likely resolve her diabetes. “After a gastric bypass, the gut signals to the brain more strongly: I have eaten, and I am full,” says Dr. Thomas H. Inge, Director of Surgical Weight Loss Program for Teens at Cincinnati Children’s Hospital Medical Center, where Alexis will have the surgery. “The first goal is to stop her weight gain. The second is to get her to a healthier weight—losing 50 lbs. would be a real achievement.” Doctors hesitate to perform the drastic surgery on kids under 15 because they can’t be sure they’re mature enough to understand the post-surgery lifestyle changes necessary for success, adds Inge. But “if we don’t do anything, she is going to die from all the weight,” Jenny says.

For Alexis, it’s the time between meals when she struggles most. “My belly is telling me I’m hungry, but I have to tell it I’m not going to eat right now,” Alexis says. “She has willpower, but sometimes it gets the best of her,” says Jenny, who has resorted to storing food in higher cabinets in the past. “Sometimes a whole bag of carrots will be gone. Or I’ve caught her eating five slices of bread at a time, and she feels like, ‘Why am I doing this?'” At one point the kitchen had to be blocked off with chairs to dissuade Alexis from indulging in late-night cravings. “We never want her to feel she has to sneak, so we put approved snacks in her room at night, like pretzels,” Jenny says.

Beyond the meticulous meal plans, for Alexis the hardest part of her gaining weight is losing her childhood. She is homeschooled because “she has a learning disability, and with her missing school for doctor’s appointments she is really far behind academically,” says Jenny. Plus “sitting in a desk all day with all that weight was hard for her.” Temptations were high too. While eating lunch with her classmates, “I wanted to grab their food, but I didn’t,” Alexis confessed. When she sees Kayley and Ethan enjoy playdates, “it’s not fair,” Alexis says. “Kayley gets sleepovers, but I don’t have any friends.” At home Jenny, a part-time dog groomer, is Alexis’s full-time companion. “She can’t dress herself,” she says. “We used to go on walks every day. Now she can hardly move.”

Despite appearances, there are vestiges of the once “happy-go-lucky” freckled kid who loves Taylor Swift. In her bedroom, Alexis shyly points out four Beanie Boo’s on top of her dresser: “These are my favorite friends. I take them to the hospital when I don’t feel good.” She then shows her Eiffel Tower jewelry holder saying, “I’ve got tons of earrings.” But her drawers full of men’s T-shirts don’t reflect her tween tastes. “She knows they don’t make girlie clothes in her size,” says her dad, Ian, who works nights for a military insurance and banking company. Adds Jenny: “She just wants people to think she’s beautiful.”

It’s been a long time since Alexis felt that way. “One day she looked around at our old family photos and said, ‘Mom, I don’t look like that anymore. Can you take those down for me, please? I’m too big,'” remembers Jenny as she looks at a snapshot of a 7-year-old Alexis at the beach, smiling in the sand. “When she was little, she brightened everyone’s day and got a lot of attention as a redhead,” she says. But by age 9, Alexis had stopped growing and was complaining of constant headaches. “I will never forget the summer she woke me up at 5 in the morning saying her head hurt and crying,” says Jenny. Two months later, Alexis was being wheeled into the operating room, and the Shapiros’ lives changed forever. “I took her in as one child and had to leave with a new one,” says Jenny. “Knowing what she was like before, it’s hard to adjust,” adds Ian. But, Jenny says, “we love her regardless.”

As they brace themselves for her next big surgery, Alexis admits she feels “scared and excited.” Jenny knows it’s just the next step in their journey. “We don’t think that gastric bypass is the answer and that she’s going to be all better,” she says. Even if she loses weight, Alexis still has to continue hormone replacement therapy, including taking steroids, to counter the host of other medical complications that come with her condition. “Alexis isn’t scared of hard work,” says Jenny. “But if she can move around and do things she loves, that would be so much better. We want to give her a fighting chance to try to live a normal life.”