In his short life, Henry Goldberg loved to laugh. Even a courageous battle with Fanconi anemia, a deadly genetic disease, didn’t take away his mischievous grin or his sense of humor. Henry underwent a bone marrow transplant at University of Minnesota Children’s Hospital in July 2000.
Following his death from the disease two years later, his family has a message for patients facing devastating illnesses: live well and laugh hard.
Goldberg’s parents, Laurie Strongin and Allen Goldberg, of Washington, D.C, were so inspired by their son’s strength of spirit that they created the Hope for Henry Foundation. The foundation will provide up to 200 University of Minnesota Children's Hospital bone marrow transplant patients or oncology/hematology patients with a gift of electronic entertainment. Patients ages 2 to 18 can choose a digital camera, a portable DVD player, a Gameboy or a personal CD player to keep.
“Henry embraced each opportunity for living completely and reminded the rest of us to do so,” says Strongin. “Among the things that Henry did to have fun while in the hospital was to watch movies on his portable DVD player,” Strongin says. “He and his brother Jack watched movies while waiting in the clinic, waiting for surgery, waiting for transfusion to run its course and waiting to get home and back to the life he was fighting so hard to live. To honor Henry’s legacy and share his magic making, we started the Hope for Henry Foundation to help other kids with life-threatening illnesses to live well and laugh hard during their struggles. The foundation will continue Henry’s magical way of making each day matter.”
“The gifts from the Hope for Henry Foundation will make a big difference in the lives of children cared for in our hospital,” says Stacy Stickney-Ferguson, LICSW, a social worker with Blood and Marrow Transplant Services at the children's hospital. “These gifts will provide an emotional lift to our patients, many of whom have been in the hospital for months.”
The foundation is also providing gifts to pediatric patients at Georgetown University Hospital in Washington, D.C., where Henry was also cared for prior to transplant. Patients who receive chemotherapy or bone marrow transplants often must remain in protective isolation for many weeks or months.
“Henry’s isolation room was filled with posters of Batman, Michael Jordan and Pokemon,” Strongin says. “He had a punching bag and boxing gloves and worked hard to stay strong during his transplant recovery. We had utmost trust in the doctors and medical staff and had plenty of support from the social work program.”
The foundation very much honors Henry’s strength, says John Wagner, M.D., scientific director of clinical research, blood and marrow transplant program, University of Minnesota, and Henry’s physician. “While we, as doctors and nurses, are so focused on providing the best medical care available, gifts like these really boost the spirits of these kids, making a real difference in their lives.”
Using learnings from the foundation’s programs at the University of Minnesota Children's Hospital and Georgetown, Strongin says they intend to expand the Hope for Henry Foundation’s programs in the years to come.
