When Nino Todaro, 5, spikes a fever, his temperature quickly climbs into the danger zone, as high as 108 degrees. So every five or six weeks his mother, Lori, brings him from Pennsylvania to the National Institutes of Health in Bethesda for treatment of his rare genetic disorder.
Although the shy, slight boy dislikes leaving his dad, he looks forward to the handmade gifts that volunteers put in his mailbox at the Children's Inn. Over the past six months, this residence, where children participating in research studies stay free, has become a second home for the Todaros.
Now, the inn, which opened in 1990, has completed a $6.4 million expansion that doubled its size, allowing Nino, his mom and three brothers to stay comfortably together. They no longer fear they will be "bumped" because a child with a more serious illness needs a room.
The number of families who have been bumped had tripled since 1999, according to statistics from NIH. In 2003, the inn turned away families on more than 400 occasions. But beginning this week, 22 additional chronically ill children and their families can call the inn home; it now has room for a total of 59 children and their families.
The new inn features a larger communal kitchen, an arts and crafts room for children and a teen room with a really good sound system -- or in the words of 14-year-old Ricky Webster of New Jersey, who was born HIV-positive, a room where "you don't have to turn the music down."
"When you're done at the hospital," Ricky said, "you can have a little fun."
For Nino, fun is being with his brothers, Joe, 11, Vinny, 9 and Angelo, 2. On days when Nino's severe arthritis cripples his legs, Joe becomes the "piggyback express," carrying Nino down the halls of the inn. The Todaros, of Carlisle, Pa., usually stay a week at the inn on their visits to NIH for treatment of Nino's periodic fever syndrome.
"When you stay in a hotel you are a guest," Lori Todaro said. "Here you are family."
Last week the Todaros joined U.S. health officials, NIH staff members and other families for ceremonies celebrating the opening of the new wing. The expansion was financed by donations and grants.
More than 6,000 families from 57 countries have stayed at the inn. Officials said increased federal financial support for pediatric research created the need for the expansion, as more children are enrolled in pediatric research studies than ever before, boosting demand for rooms.
Philip Pizzo, dean of the Stanford School of Medicine and affectionately called "the father of the inn," reminded U.S. health leaders how the inn first got started.
"It's very important to remember that it really occurred because of the voices of young children," said Pizzo, former chief of pediatrics at the National Cancer Institute.
Many of those young voices, like Kristal Nemeroff, 16, of the Pocono Mountains in Pennsylvania, who was one of the first residents when the inn opened, were filled with gratitude.
"The inn has been a blessing for me and my family, a place where we can come and seek comfort," said Kristal, who suffers from brittle bone disease.
Some families have gone the extra mile to show their appreciation. Parent Bob Vogel of Brooklyn, an avid runner, celebrated his 50th birthday in 2002 by running a 50-kilometer race in New York to benefit the inn. He raised $25,000.
Vogel credits NIH with saving his 13-year-old son's life.
Scott Vogel was 6 months old when it was discovered that he had a genetic immune deficiency disease. At age 8, he contracted a near-fatal fungal pneumonia infection. Doctors in New York were unable to stem the infection. It was not until Bob Vogel discharged his son, rented oxygen tanks and drove him to NIH that his son finally recovered, Vogel said.
Although Scott has had harrowing times through various treatments at NIH, he talks mainly about the good times: bingo games, pizza parties and craft projects at the inn.
"When you spend enough time around chronically ill kids, you walk away feeling how lucky you are," Bob Vogel said as he sat with his son in the new teen room, complete with a 48-inch TV.
"Some of these kids can't go home. You learn how resilient kids are," Vogel said. "I've never seen kids sitting around here feeling sorry for themselves."