New Jersey Boy, 6, Cured of Sickle Cell Anemia Thanks to Medical Breakthrough

Second of a three-part series

Six-year-old Tobi Okunseinde from Haworth, NJ, in Bergen County, started kindergarten last fall and continues to enjoy life like any other little boy – engaging in games with his classmates on the playground, playing with toys and video games and, with the recent snowfall, preparing to begin his first ski lessons.

But for Tobi and his family, his ability to participate in such routine activities is nothing short of a miracle. As his father Folu Okunseinde explained during an interview with New Jersey Urban News, the future previously looked bleak when, at 21 weeks, he, and his wife, Akua, learned that Tobi would be born with sickle cell anemia – a disease that’s generally known as incurable.

“We were living in London in 2017 when we got the news and we knew we had to deal with it,” Okunseinde said. “After talking with a team of specialists, we learned about the potential of a bone marrow transplant as one of several options for treatment. So, we moved to the US when Tobi was just nine months old, where there were better options for helping our son – options that a lot of families know very little about.”

But the answer for Tobi, who, last year was declared cured of sickle cell disease, came from an unexpected bone marrow donor – his little brother, Kwasi, who will soon celebrate his third birthday.

“Kwasi changed his brother’s life – he definitely saved his life. But the other part of this miracle rests with Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center,” Okunseinde said. “We know we’re fortunate and we cannot begin to thank the medical team who have been there for us as Tobi fought through chemotherapy, nausea, multiple pain crises and the transplant protocol.

Dr. Stacey Rifkin-Zenenberg, a pediatric hematologist and oncologist at Hackensack Meridian Children’s Hospital, and Alfred Gillio, MD, director of the Children’s Cancer Institute, oversaw the transplant, which remains the most effective form of treatment for sickle cell patients under 16 years old.

“Forty percent of patients who have sickle cell have available donors for transplant and the younger the patient who is the recipient and the younger the donor the better,” said Rifkin-Zenenberg who added that Black and brown children are disproportionately more impacted by sickle cell anemia than white children. “Now, moving forward, we’re just grateful that we can expect Tobi to lead a normal life and go into the world with confidence. Being a ‘regular kid’ has been the most fantastic experience for him and for us.”

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’s not enough awareness of the therapies that are available,” Okunseinde said. “And even if families are aware, the process of getting treatment can be daunting. For us, without the resources we received, family support, hours of research and constant advocacy, we never would have been able to cure our son.”

As for Tobi, his words of advice to other children with sickle cell anemia are simple – “Don’t be afraid.”

To support the family’s fundraiser and contribute to Tobi’s Nurse Navigator, visit give.hackensackmeridianhealth.org.