When Hayden Zavareei was diagnosed with an aggressive form of leukemia at 6 years old, Bethesda residents were generous to her family, volunteering time and money on their behalf.
Neighbors babysat, brought meals, gifts and raised about $30,000 so the family could pay medical bills and other expenses, said Natalie Zavareei, Hayden’s mother.
“The community was amazing,” said Zavareei of Bethesda.
Not everyone is lucky enough to live in a neighborhood that can afford to provide that kind of financial assistance, which is why two years ago the Zavareei family said they set up Hayden’s Journey of Inspiration Foundation.
The foundation provides free housing for families of children who are being treated for childhood cancers at Georgetown University Hospital and require a stem cell transplant at Duke University Medical Center in Durham, N.C. That is the route Hayden traveled when she was being treated for leukemia, so first priority goes to children who were treated at Georgetown, Zavareei said.
“We have an apartment down at Duke,” said Haydeni, 14, who has been in remission for eight years. “We set it up and furnish it so that when they need it they can just move in.”
Funding for the foundation has come from a variety of sources, including a golf tournament, car wash, bake sale and karaoke night at Tommy Joe’s Restaurant in Bethesda.
On Oct. 14, the foundation is hosting its first 5K Run/1 Mile Fun Run & Walk in Bethesda, an event Zavareei said is in line with the family’s preference for family-friendly fundraisers. The event will start at 8 a.m. at the south end of Bulls Run Parkway behind North Bethesda Middle School. The one mile fun run and walk will start at 9 a.m. Prizes will be awarded to top runners and fundraisers at a post race celebration.
The race is a family affair. Hayden plans to participate in the walk/run, along with younger sisters Isabella, 10, and Jordan, 13.
The Zavareei family hopes to raise enough money to set up two or three more apartments. It costs about $25,000 per year for rent, and $25,000 to retrofit an apartment for children whose immune systems have been compromised, Zavareei said. The decor in the apartment was chosen for easy cleaning, and it is located on the ground floor within miles of the hospital.
“We want it to be nicer than home in some ways,” said Hassan Zavareei, Hayden’s father. “No bills to pay.”
The apartment currently is being used by its second family. Families are linked to the free housing through Duke University Medical Center. The first family to use the apartment lost their months-old son to Omenn Syndrome, a rare genetic disorder that compromises the immune system.
Hayden was lucky enough to beat her diagnosis of actue myeloid leukemia, an aggressive cancer that is rare in children. It has a 40 percent to 50 percent cure rate, Zavareei said.
Her diagnosis started at a family doctor’s office when Hayden had a series of small but persistent bruises checked, Zavareei said. Before results from the bloodwork were back, Zavareei was told to pack a bag for Georgetown University Hospital.
Hayden was treated initially for the leukemia at Georgetown University Hospital then sent to Duke University Medical Center for a cord blood transplant from an unrelated donor.
Despite high earning professions — Hassan Zavareei is a lawyer and Zavareei a dentist — the family needed financial support during their daughter’s illness.
The whole family — at the time Hayden, 6, Jordan, 5, and Isabella, 1 — moved to North Carolina for Hayden’s cord blood transplant, a month’s long treatment.
Zavareei stopped working entirely, while Hassan worked part time, “from the hospital room, working on briefs at 2 .a.m.,” he said.
Despite earning little money, they had two households to support, and large copays for medical insurance. Zavareei said one medication cost them $2,000 per month.
Hayden knew she was sick, but was not aware her life was in danger.
“I didn’t really know what was happening,” Hayden said. “I was just like, “Ok, when can this be done.”“
Today, Hayden goes to Duke once a year for checkups, and is anxious for the day she can stop going entirely.
“Hayden always asks how long she has to come back,” Natalie said. “They always tell her until she’s 96.”
To donate or register for the 5K/1 Mile Fun Run and Walk, go to www.hjifoundation.org.