Children with rare diseases and their families build bonds amid a world of fear
By Tara Bahrampour,
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.
Politics, religion and language are no barriers. Teens seek out other teens, including a tall, gregarious Jamaican who befriended a shy, diminutive Nepali with the same blood disorder. Besides listening to indie rock and reggae together, the two got their bone-marrow transplants at the same time and recovered in adjoining rooms. Families have grown close during trips to museums, baseball games, cherry blossom viewing and a Tina Turner concert.
They also connect over the fear of death. “Families are dealing with it every day,” said Meredith Carlson Daly, the Inn’s media-relations manager. Often, a treatment does not work and a family returns home to make the child comfortable; occasionally, a child dies at NIH. In each case, the families are acutely aware of one another’s suffering.
Many of the children handle the spectre of dying with astounding grace.
“Kids are often more willing to face that than parents are,” Daly said. “Adults often have a very hard time facing coming to the end. Kids are often the most heroic. They understand that they might not make it, but they know that by being here, they can maybe help other kids not go through what they went through.”
Still, she said, “it’s really difficult, especially because there are bonds that are formed. One family, the kid was not doing well, and the manager on duty got word that the child had passed away. All of a sudden, above them they heard a thud, and the manager ran upstairs and one of the girls who was friends with the family and was wheelchair-bound had gotten up out of her chair to hug the mother, and the thud was her falling.”
Families from different cultures have different approaches to mourning and consolation.
“Families from the U.S. tend to go more into themselves and draw upon their own families, while international families really tend to pull together, maybe because that’s all they have,” said Jennie Lucca, director of facilities and resident services at the Inn.
Over the years, the Lopezes have watched other families take their children home to die. When that happens, “we feel pained and sad, and maybe it comes to our minds that our treatment, too, could fail,” said Cristian Lopez, Benjamin’s father. “But in another way, I have told families that by coming to NIH, we can take comfort in knowing we have done everything we possibly can.”
They also have helped researchers develop treatments for future patients. Since the Children’s Inn opened in 1990, NIH has developed treatments that have substantially improved the survival rate for diseases including childhood AIDS and Burkitt’s lymphoma.
The Lopez family is returning to Chile next week. It is, they know, a miracle. Although Benjamin is an energetic boy with a delighted smile, he walks with a limp, faces learning and physical delays, and probably will take antibiotics for the rest of his life. But his progress has surprised even his doctor.
In December, his family moved to Woodmont House, a new off-campus facility for children who are in stable condition and don’t need the more-intensive services of the Children’s Inn. Recently, they shared lunch there with Carlos Diaz Flores and Ada Ivette Polo Vega, whose son Edgardo, 26, is being treated for lymphoma, with an uncertain prognosis.
Vega made flan and beans and rice, which they added to roast chicken and appetizers from a restaurant.
For the better part of two years, the families have supported each other. Now, the Lopezes were preparing to return home while Edgardo lay in the hospital.
Vega, a teacher in Puerto Rico, spoke optimistically of the day when the families would visit each other in their home towns: “It will be a wonderful experience to meet later to look back on all this.”
But for now, it was time for goodbye. Lopez said he could barely stand to say that word.
“We are leaving people who are very close to us,” he said. “They are people we really love, like family. It’s more than a friendship. We’ve suffered with them, we’ve lived with them, we’ve cried with them. It’s strange, because you want to go home, but on the other hand, you’re leaving these people you’ve been so close to, to continue fighting, continue suffering.”