Alexis Shapiro, 12, of Cibolo, Texas, developed a rare disorder after surgery for a brain tumor two years ago, one that causes her to gain weight constantly, even on a restricted diet. Surgery to remove a brain tumor two years ago has left a 12-year-old Texas girl with a heartbreaking condition that makes her gain massive amounts of weight — even though her body thinks it’s starving. Doctors say a gastric bypass operation is the only thing that can help Alexis Shapiro, who is 4-foot-7 and weighs 198 pounds.
Alexis’ parents — and her doctor — are protesting the decision from insurer TRICARE, which they say sentences the child to a fate of dangerous health problems and social isolation caused by hypothalamic obesity, which is packing on at least 2 pounds every week. Alexis Shapiro, center, is shown here in 2011, with her sister, Kayley, and brother, Ethan, a month before surgery to remove a benign brain tumor. In just the past three months, Alexis was hospitalized for a kidney infection and developed Type 2 diabetes that requires nightly insulin injections, both related to her growing girth. But a spokesman for TRICARE and Humana Military, which provides insurance coverage for Alexis’ father, Air Force veteran Ian Shapiro, said their rules are clear. However, an appeal could take months or longer, said Jenny Shapiro, and there’s no guarantee that the surgery would be approved even then.
Jenny Shapiro says Alexis remembers when she was a normal-sized girl, before the brain tumor surgery triggered hypothalamic obesity, a rare condition. Then Alexis developed a craniopharyngioma, a rare kind of benign brain tumor that grows near the pituitary gland and affects at most 1 child per every million each year.
The good news was, the tumor wasn’t cancer and the surgery to remove it, though scary, went well. More than half of children who have such tumors develop problems with excessive eating — called hyperphagia — and significant obesity.
In Alexis’ case, the result was an immediate, unceasing weight gain even with a diet restricted to 900 to 1,400 calories a day — and with extra exercise, said Jenny Shapiro. Alexis’ illness has upended family life, even though Jenny Shapiro said she works hard to keep things normal. It’s difficult finding clothes for Alexis, who now wears a woman’s size 1X or 2X and who goes up nearly a size every month, Jenny Shapiro said. Worse, though, than the daily challenges is the worry about where Alexis’ illness will lead. The risk of devastating consequences is what compels doctors to consider bariatric surgery for patients like Alexis. Though the literature is scant — Inge and his colleagues have reviewed just 70 cases — craniopharyngioma patients who've had the surgery have lost significant weight, between 20 percent and 30 percent of their body mass.
Just ask Tawana Blackwell, 53, of Indianapolis, Ind., whose daughter, Kelsie, was diagnosed with hypothalamic obesity at age 8 and didn’t have surgery until five years ago, at age 16.
After the surgery, Kelsie, now 21, lost 100 pounds and has been able to keep it off with a careful diet and regular exercise. Inge has been pushing for an exception to the TRICARE bariatric surgery rule based on the severity of Alexis’ symptoms.
Photos of Alexis and her siblings, Kayley and Ethan, prior to Alexis' surgery in 2011.
Alexis Shapiro, 12, of Cibolo, Texas, is improving steadily after weight-loss surgery on March 21.
A girl who had surgery to correct a disorder that left her always hungry and sent her weight past 200 pounds is doing better than doctors expected.
More extreme weight-loss patients are choosing to remove the loose skin through cosmetic surgery, and a recent study showed that the bodies and minds of those who do end up faring much better.

Franklin Santana, a 29-year-old who lives in the Bronx, had gastric bypass surgery in October 2011, and before the surgery, he weighed 395 pounds. I’m wearing a fat suit; I feel like I’m a thin person inside wearing a body that’s twice the size of mine. Fantana had done his research before getting the surgery done, and he knew that he’d probably be saddled with “loose skin” after it was over. Deborah Olmstead, who first had weight loss surgery done in 2001, knew to expect it, too; she just didn't know how awful it would make her feel.
The loose skin is caused by losing a huge amount of weight – as in, 100 pounds or more – in a very short amount of time.
Jasmin Maldonado shown before her gastric bypass surgery at left, and after her body contouring surgery at right.
You've done all this work, you've made this big, massive change that you see on the scale, but you don't necessarily see it in your clothing, or the way you feel about yourself. The most effective way to remove the excess skin is through cosmetic surgery, in one or more of an array of procedures known as body contouring. People who had weight-loss surgery, and subsequently had the excess skin removed, were less likely to gain weight back than those who had the surgery but did not undergo a body contouring procedure, according to a recent study published in the journal Plastic and Reconstructive Surgery. Those who choose to have body contouring done usually pick the circumferential body lift: Doctors make an incision across the back, then around the flanks and abdomen, cutting away some of the excess skin and tightening the rest of it by suturing the incision back together. Stopping the painful chafing is important, and such a relief, say people who’ve had body contouring done.
Russert covered the 2008 Presidential election, reporting from both the Democratic and Republican National conventions.
Since May of 2009, Russert has covered Congress with a focus on the House of Representatives.
Russert blogs on First Read, the first place for key political news and analysis from the NBC News Political Unit. Not limited to political reporting, Russert has covered Hurricanes Gustav, Ike and Irene, the earthquake that hit the East Coast in August in 2011 and the Boston bombings. In 2012 Russert filed a report for “Dateline” about the possible wrongful conviction of Jon-Adrian Velazquez at New York’s infamous Sing-Sing Prison.
Luke Russert blogs on First Read, the first place for key political news and analysis from the NBC News Political Unit. In May of 2009, Russert was honored with the Marlin Fitzwater Award for Leadership in Public Communication from Franklin Pierce University, an award meant to honor individuals who have made significant contributions to public discourse in the spirit of a healthy democracy. Gastric bypass and other weight-loss surgeries may be covered, but only if the patient is 18 or has achieved full bone growth. The bad news was, Alexis developed hypothalamic obesity, a rare condition caused by damage to the hypothalamus, the fingernail-sized organ that helps govern energy balance, appetite — and weight.
Their daily routine is governed by a strict diet and exercise plan that is often frustrating for Alexis and the rest of the family.
She had to be home-schooled starting this year, both because her condition leaves her in constant pain and because of comments from other kids. In addition, gastric bypass surgery, which makes the stomach smaller and bypasses some of the small intestine, appears to have an effect on the part of the brain related to appetite and satiety, the sense of fullness. Doctors at the San Antonio Military Medical Center have referred her case for higher review, but it’s not clear where it stands.
The surgery, which was originally rejected by her father’s insurance company, has reversed her diabetes and helped her lose at least 6 pounds, doctors said.

Scot Glasberg marks incision lines on Jasmin Maldonado at Lenox Hospital before her surgery to remove excess skin around her midsection.
The body may be lighter, but it’s now weighed down with folds of sagging skin, causing a wild amount of emotional and physical (think: chafing) pain. It can happen when the weight is lost through diet and exercise, but it happens more often to weight-loss surgery patients. Jasmin Maldonado, a 36-year-old living in Brooklyn who lost 130 pounds after weight-loss surgery nearly a decade ago, says a daily routine of squats, sit-ups and pull-ups has made a difference. And those who do shed the extra skin generally fare better than those who don’t, both psychologically and physiologically.
The report followed about 100 patients who’d lost about 100 pounds after weight-loss surgery.
Ali Modarressi of the University of Geneva in Switzerland, go so far as to argue that body contouring should be a routine part of bariatric surgery.
After the body contouring is done, patients routinely lose another 10 to 15 pounds of loose skin alone. His election day reporting on the impact of young people on Barack Obama’s victory contributed to NBC’s News & Documentary Emmy award as part of the 2008 Election Night coverage.
He has reported on various political issues including the passage of the Affordable Care Act, the Republican resurgence of 2010, the debt limit crisis of 2011 and the Fiscal Cliff fight of 2012. He has also appeared as a street correspondent on NBC’s “New Years Eve Special with Carson Daly” and taped various interviews with celebrities including Usher, Jessica Alba and Ted Nugent.
Inge, a Cincinnati expert in pediatric obesity who is treating Alexis, acknowledged that there have been few cases like hers.
She underwent bariatric surgery at age 16, which helped her lose 100 pounds and cut her severe food cravings. She lost 130 pounds following gastric bypass surgery and was left with sagging skin on several areas of her body. People who lose a massive amount of weight are often surprised at how unhappy they still are with their bodies. With a slower, more gradual weight loss, it's easier for a person’s skin elasticity to sort of snap back into place, shrinking back down as the fat is lost.
Those who did not have any cosmetic procedures to remove the resulting excess skin ended up gaining back about 50 pounds, but those who did have body contouring done only gained back about 13 pounds. People go with the body lift because it makes the biggest difference in their appearance, doctors say; plus, it’s easier to talk their insurers into covering it, because the surgery has some real physiological benefits, in addition to the psychological improvements.
In 2010 Russert received a public apology from then House Ways and Means Committee Chairman Rep. But he said surgery may be the only way to stop weight gain that could top out at 400 pounds — and to cut the brain cravings that make Alexis want to eat an entire jar of peanut butter at one sitting.
Charlie Rangel (D-NY) after the congressman chastised Russert for his aggressive questioning over an ethics report that determined Rangel had failed to disclose improper real estate holdings and had illegally solicited donations using official Congressional stationary.
Anthony Weiner (D-NY) after reports surfaced that the congressman sent inappropriate pictures over the internet to young women.

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