KISSIMMEE, Fla. — Twelve-year-old Cecily Vammino’s eyebrows shot up as she closed her lips across the veggie pie. It was a delicate mélange of carrots, potatoes, and zucchini, surrounded by a vaguely sweet crust, and it was not working for her.Cecily’s jaw rigorously dispatched the invader while her left hand slid the remaining menace to a place the place it could not hurt her.
“Uh-uh,” she stated, shaking her head.
Like each other meal Cecily can be sharing with 19 other youngsters and their mother and father this month, this one was freshly cooked and served by the crack employees of kitchen professionals who have been working underneath strict orders: Give the youngsters something they want, so long as it’s all organic, and freed from gluten, dairy, salt, and processed sugar.
It was a grand medical — and, in methods, social — experiment. The youngsters are all dwelling with a uncommon kidney disorder referred to as focal segmental glomerulosclerosis, or FSGS, during which their kidneys leak proteins into the bloodstream. The illness strikes 5,000 individuals in america annually, and for a subset of pediatric patients, like most of these here, treatments like steroids and immunosuppresants don’t help. They face painful symptoms and, ultimately, the prospect of kidney failure.
For many years, FSGS has represented a stubborn medical thriller, but in recent times researchers have unearthed clues that have led them to ask a easy question. In an age when seemingly every ailment is handled with a capsule, might a change in diet primarily drive this disease into remission and, probably, save these youngsters’s lives?
“It might be large,” stated Dr. Leonardo Riella, the black-bearded nephrologist who’s leading the research staff here. “We’re hopeful, but we’ll see.”
To get to the reply, though, Riella and his colleagues had to first design a analysis trial that would control the youngsters’s diet long sufficient to watch attainable results, in a spot the place medical and scientific protocols might be followed — and, importantly, in an surroundings which may tempt households to sacrifice a month of their lives within the identify of science.
Two concepts came to thoughts: camp and Disney.
Since it might be troublesome to seek out an established camp in Orlando that would accommodate such dietary restrictions for a big group, Riella and his staff at Brigham and Ladies’s Hospital in Boston created a camp-like setting at a water park resort right here.
For each time Cecily and her buddies confronted veggie pies (and whipped avocado desserts), there were appreciable perks: a romp on the water park, films in an enormous in-home theater, a personal efficiency from former Ringling Bros. acrobats, and trips to Disney.
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