Many times when someone hears about a young person struggling with a life-threatening health issue, they are very supportive and lift up prayers on the child’s behalf. Often when fundraising activities occur, to assist families’ of these children, an outpouring of community support is overwhelming, especially here in Sampson County.
One young lady, now 13 years old, was one of those children near death’s door, with a community reaching out to her and her family. Now Hayden Zavareei is giving back.
Hayden lives in the Washington, D.C. area but has deep roots in Clinton and Sampson County. Her great-grandmother, Cathleen Britt, and her grandparents, Vicki and Danny Britt, still live in Clinton. And Hayden’s mother, Natalie was born and raised here.
When Hayden was six, she was diagnosed with a rare form of leukemia. She was hospitalized in Georgetown for months and separated from family. She underwent so many surgeries and other procedures she cannot even remember them all.
“Sometimes I got so sick from complications of the treatments that I had to spend many days in the Pediatric Intensive Care Unit,” shared Hayden. “Because my immune system was so weak, I was in an isolation unit. I couldn’t leave the hospital for months at the time.”
When visitors were allowed, they had to wear masks, gowns and gloves just to be in the room with the youngster.
The amazing miracle child had such a strong form of cancer that even after months of chemotherapy, she relapsed. Her only hope for survival was a whole new bone marrow that would create new blood cells that were not cancerous. Because of Hayden’s family background, their bone marrow was not compatible nor could her doctors find a compatible donor in a nationwide search. Hayden’s doctor in Georgetown, Dr. Azzin Shad, informed the family that Hayden would have to have a stem cell transplant from umbilical cord blood. At that time there were only two medical facilities that did that type of procedure. The Zavareei’s chose Duke as the best place for this rare and risky procedure.
As a result of Hayden having to go to Duke, the entire family had to stop what they were doing and move to Durham for the procedure. For nearly a whole year her father, a lawyer, her mother, a dentist, and her sisters, Jordan and Isabella, uprooted their lives to live in Durham for Hayden’s life-saving medical treatment.
“The doctors at Duke used radiation and even stronger chemotherapy to destroy the bone marrow that was producing the cancerous blood cells,” explained Hayden. I was so weak as the new stem cells struggled to engraft and create a whole new bone marrow in my body. It did not bother me that I lost my hair or that the steroids bloated my face. But I was exhausted and in pain for months. The sores in my mouth, throat and stomach were so bad I couldn’t eat real food. I survived on intravenous nutrition and constant blood transfusions. This was all really hard, and I was in the hospital for months.”
Her grandparents explained that is was very difficult on the family to be away from home so long, trying to maintain two houses plus care for Hayden and her sisters. Fortunately Vicki Britt had just retired and she spent nearly the entire year living with the family, caring for them while Hayden received her treatment.
“We realize how much of a miracle Hayden is,” Mrs. Britt said. “There were others that came to Duke while we were there. Some were not as fortunate as we were. We are so grateful to Dr. Joanne Kurtzberg, who heads up Duke’s transplant center and Dr. Shad, for all they did to help get our Hayden well.”
The road was long for Hayden, and her memories still pretty vivid.
“In a way, I had two transplants. I had the cord blood transplant and I had to transplant my entire family hundreds of miles from my home. This might sound pretty rough (and it was), but I was actually very fortunate. Our friends and family helped us get an apartment in Durham and helped us with the logistics and cost of keeping two households for almost a whole year. Seven years later, I am cancer free. My old bone marrow is gone, and my new marrow is producing clean, healthy blood,” shared the young survivor.
Now that Hayden is healthy and strong, she is active doing things that most normal 13-year-old young ladies do. She is involved in sports, acting and many fundraising activities to support her new foundation, Hayden’s Journey of Inspiration. The HJI Foundation represents Hayden and her sisters, Jordan and Isabella. Its mission is to provide a support system for families facing childhood cancer and undergoing stem cell transplants. “We want to provide direct support to the families who must struggle with the costs of maintaining two homes while caring for a child with a life-threatening condition,” explained Hayden’s mother, Natalie.
“It is my desire to help the other families that have to take the same journey that my family and I traveled. I hope others will join us as we strive to help these families on this journey, just like so many of you helped us,” expressed Hayden.
It is the goal of Hayden’s Journey of Inspiration to eventually renovate, furnish and lease two homes or apartments in Durham for families of kids with cancer who come to Duke for their stem cell transplant. The procedure lasts up to a year. The initial cost of establishing each home is $25,000. These costs are relatively high because the homes must be renovated and furnished in a very specific manner to make them safe for families with immuno-compromised children. In addition to this initial investment of $50,000, the yearly maintenance and rent for these homes will cost another $50,000.
Hayden’s foundation was founded by her to provide services to families going through what she and her family faced. Currently the first apartment is about ready for its first family to arrive. The Britts have been selected to manage the site due to their close proximity to the Durham home.
“We have been extremely busy lately trying to get everything put in that a family could use during their possible year-long stay,” shared Danny.
The apartment is three bedrooms and has new televisions, appliances, and many amenities that will help to make the family’s life more bearable during the treatment process.
“Hayden and her family, as well as Danny and I are just amazed at the outpouring of love that we received during Hayden’s diagnosis seven years ago. We received so many blessings through fundraising activities from churches and other groups, cards, gifts and prayers. God has truly provided a miracle for Hayden. We are so proud of her, with all she has been through, for attempting to give back to others. We appreciate all everyone has done and covet your prayers and ask if you would like to support Hayden in her efforts, please do so,” asserted Vicki.
Hayden has been featured in a PBS news story regarding cord blood transplants. She was also named the Leukemia and Lymphoma Society’s 2006 Girl of the Year.
To learn more about Hayden’s Journey of Inspiration visit the website: www.hjifoundation.org. Anyone wishing to contribute can also do so online at the same sight.