Melva had declared the day before that she hated turkey, but she reluctantly agreed to a small slice along with marshmallow-covered sweet potatoes, described to her as “muy Americano.”
It was the first Thanksgiving for Melva and her father. They traveled from Peru so she could receive medical treatment for her rare immune deficiency disease and have been staying at the Children’s Inn.
At a site just outside of the District, the Children’s Inn houses families who come to Bethesda from around the country and the world to undergo experimental treatments at the National Institutes of Health. The Inn provides free housing, meals and activities so that families can focus on treatment.
Volunteers serve families five days a week and on holidays. On Thursday, volunteers from nearby Temple Beth Ami dished Thanksgiving dinner to families at the Inn, continuing a tradition of more than 20 years.
“Families aren’t able to go home because a child is too sick or not able to pause treatment,” said Jennie Lucca, CEO of the nonprofit Inn. “Being home is what they hope for, but we try to provide them a holiday similar to home.”
While it may be difficult for some families to be away from home for holidays like Thanksgiving, volunteers aim to make the Children’s Inn as comfortable as possible year round, Lucca said.
The Inn, on NIH’s Bethesda campus, is designed to be “a place like home,” Lucca said. Along with hotel-like rooms, there are bright, airy play areas, laundry rooms and kitchens. Volunteers arrange fun activities and outings in addition to one-on-one tutoring so kids don’t fall behind when they’re away from school.
Javiar Gonzalez traveled from Miami to NIH for his son’s fourth round of medical treatment this year. JJ, who is 30 months old, has myotubular myopathy, which affects his muscular system. JJ uses a wheelchair and eats and breathes through tubes. With a 50 percent mortality rate, many children with the disease don’t make it past age 2, Gonzalez said. But “there was nothing but hope” after his family learned that JJ could undergo an experimental gene treatment.
Gonzalez said he and his wife had initially thought they’d have to take out a second mortgage to travel and stay in Maryland while their son was treated. But staying at the Children’s Inn “was a huge blessing.”
“It’s like a home away from home,” said Gonzalez, who also invited JJ’s grandparents to the Inn to celebrate Thanksgiving. “It’s priceless.”
The Thanksgiving celebration was smaller than usual this year. In August, a storm caused structural damage to the roof of the Children’s Inn, forcing the evacuation and shutdown of half the property. The building, which typically houses 45 families, is now down to 23.
Families have been relocated to apartments in the area, but it has been costly to pay for rent and transportation to NIH campus for treatments, Lucca said. The area that has been closed off also houses much of the entertainment and educational areas that kept children and their families busy between medical appointments.
The damage has set the Inn back about $400,000 for repairs and unexpected operational costs. Lucca said the Inn hopes to make up some of the cost with the goal of raising $55,000 on Giving Tuesday, the altruistic version of Black Friday in which nonprofit organizations seek donations in the days after Thanksgiving. Lucca said she hopes to have the Inn fully restored by February.
Since 1990, more than 14,700 children and their families from 94 countries and all 50 states have come to the Inn. In the last year alone, it served patients who participated in more than 540 clinical trials. Children and young adults up to age 30 are eligible to stay there.
The Inn also allows families to meet other families with children suffering from the same rare diseases or circumstances. They can trade notes and support each other during their difficult journeys.
“Every day is important and every holiday is important for the people who are providing families support,” Lucca said. “And for families receiving support it’s just important for them to make memories because they don’t know what the next year will bring.”
Melva said her disease used to make her feel bad, with stomachaches, fevers and pain. She has spent most of her childhood in hospitals in Peru and doctors thought she would need a bone-marrow transplant. But after trying experimental medicine at NIH, she said she feels better.
“She’s happy and calm when she’s here,” her father, Carlos Fernandez, said.
At the dinner table, Melva finished all her potatoes but pushed the turkey to her father’s plate without even trying a bite.
She then had her first taste of the gooey sweet potato casserole, and declared it one of her favorites.
“Dulce!” she exclaimed.
It was sweet.