Children's Inn at NIH offers youths with rare diseases hope, and a place to bond

Washington Post Staff Writer
Friday, February 25, 2011; 10:52 PM

In the bright, airy atrium, an Argentine boy and a Jamaican boy watch, transfixed, as a boy from Utah plays on an Xbox. A Ukrainian family sits down to an early dinner while a British teenager rummages in the refrigerator for a snack as the smell of Caribbean chicken curry wafts overhead.

All are enjoying the normal trappings of family life. At the same time, they are painfully conscious of life's fragile thread.

This looks like a posh summer camp, complete with pool tables, basketball court, arts room and Wednesday night bingo games. But the "camp" is on the grounds of the Children's Inn at the National Institutes of Health in Bethesda. And the children have some of the world's most rare and mystifying diseases that have led their hometown doctors to throw up their hands in despair.

Accompanied by their families, they come here in a last-ditch effort to be saved. Their treatment is paid for by NIH, which spends hundreds of millions of dollars a year developing trial therapies of the type that these children participate in. Despite this access to cutting-edge research, many children ultimately die of the diseases that brought them to Bethesda.

The Inn offers the families 59 private rooms that connect to common playrooms, kitchens and lounges, including an oversize fireplace that gives the 72,000-square-foot facility the feel of a ski lodge.

Each year, about 1,500 children and young adults check in, and many find themselves forming tight friendships with other families.

"This woman from Russia, her son has the same thing our daughter has," said Sam Pauani of Newburgh, N.Y., who for two years has been coming to the Inn with his 3-year-old daughter, Quinn, so she can be treated for a rare inflammatory disease. "We've met people from India, Russia, Australia. Everyone's kind of in the same boat: Either the doctors [at home] don't know what's wrong, or they can't do anything."

Families from the United States tend to stay for shorter periods, returning as necessary for additional treatment and monitoring.

International visitors, who make up 10 percent of the families, stay longer, in part because of the expense and difficulty of traveling. For them, the Inn becomes their home in America.

When Benjamin Lopez and his parents arrived at the Inn from Chile three years ago, the boy, now 5, was so sick that Chilean doctors had given up hope of stopping the infectious abscesses ravaging his brain, lungs and bones. Afflicted with a rare immune system disorder, he could not walk or talk.

During their time at the Inn, Benjamin's family has become adept at helping newcomers adjust.

"When you see a family come and seem totally lost, you go help them, and if you speak their language, you tell them that they're not the only ones going through this and that they are safe here," said his mother, Alejandra Lorca.

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