Paying it Forward to Sack Sickle Cell Disease
June 21, 2023
Five-year old Tobi Okunseinde of Haworth is feeling well and headed off to kindergarten this fall following a bone marrow transplant that cured his sickle cell disease at Hackensack Meridian Children’s Health at Joseph M. Sanzari Children’s Hospital. The transplant - overseen by Alfred Gillio, M.D., director of the Children’s Cancer Institute - gave Tobi a new lease on a healthy life, and now the Okunseinde family is paying it forward.
With the assistance of Hackensack Meridian Health Foundation, the family has launched a $150,000 fundraiser to educate others about treatment options and support a nurse navigator to guide families through the often complicated process involved in treating sickle cell disease, including the coordination of care with medical providers, insurance companies and other psychosocial support.“There is not enough awareness of the therapies that are available,” says Folu Okunseinde, Tobi’s father. “And even if families are aware, the process of getting treatment can be daunting.”
Sickle cell disease, a group of inherited red blood cell disorders that affect hemoglobin, the protein that carries oxygen through the body, affects more than 100,000 people in the United States and 20 million worldwide. It can lead to serious problems including stroke, infections and eye and lung problems. Those with African ancestry are more prone to the disease.
Gene therapy, blood and bone marrow transplants are existing cures, but research is ongoing and there are effective treatments that can manage symptoms and prolong life. Folu and his wife, Akua, feel fortunate to have found Joseph M. Sanzari Children’s Hospital - a leader in pediatric bone marrow transplant.
“The whole team was amazing,” says Folu.
Tobi was diagnosed with sickle cell disease while the family lived in London in 2017. While visiting the U.S. the following year, Tobi had a health crisis that landed him at Joseph M. Sanzari Children’s Hospital, where discussions began about the curative transplant. After returning to live in the U.S., Folu and Akua, after undergoing IVF with pregenetic testing, welcomed Kwasi, their second son, in 2021. Kwasi matched 11 different genetic markers, which made him an optimal donor for Tobi’s transplant. In April 2022, Tobi started transplant protocol. He endured chemotherapy, pain, nausea and fatigue, but new protocols at the hospital made it easier for Tobi to manage. Soon after, Tobi was declared cured in August.
“Without our resources, family support, hours of research and constant advocacy, we never would have been able to cure our son,” says Folu.
To date, Tobi and his family have raised more than $27,000 from friends, family and colleagues with matches from Folu and Akua’s former employers at Goldman Sachs and Google. “We’re really just looking for other families to have the same outcome that we have,” says Folu, who hopes the effort will lead to at least 10 children annually being cured of the disease.
World Sickle Cell Day was celebrated on June 19, paying tribute to all patients who live with the disease and those who were cured. We wish Tobi a healthy and abundant sickle cell disease-free life and commend the Okunseindes for their valiant work in raising funds to help other children and their families.
Next Steps & Resources:
- To support the family’s fundraiser, please visit their giving page. To learn more ways you can support Sickle Cell Disease research and treatment, contact Richard Knupp, vice president of development, at richard.knupp@hmhn.org or visit TackleKidsCancer.org.
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