Medical breakthrough cures 5-year-old New Jersey boy of sickle cell anemia

HACKENSACK, N.J. -- A New Jersey boy was cured of sickle cell anemia thanks to a medical breakthrough.

Five-year-old Tobi Okunseinde from Haworth has a lot to thank his little brother Kwasi for.

"He definitely changed his life. He definitely saved his life," said Folu Okunseinde, the boys' father.

Tobi wasn't even one when his parents found out he had sickle cell anemia. It's generally known as incurable.

The Okunseindes learned about curative therapy through a bone marrow transplant from an optimal donor: their younger son Kwasi.

"Once we found out about curative therapy, the bone marrow transplant, we knew there was a light at the end of that tunnel," said Okunseinde.

Tobi fought through chemotherapy, nausea and much more.

In May, a year after Tobi received the bone marrow transplant from Kwasi - who was just one-year-old at the time - he was officially considered cured of the disease.

"Going to kindergarten as just a 'regular kid' has just been the most fantastic experience," said Okunseinde.

"Forty percent of patients who have sickle cell have available donors for transplant," said Dr. Stacey Rifkin-Zenenberg, a pediatric hematologist and oncologist at Hackensack Meridian Health's Joseph M. Sanzari Children's Hospital.

Rifkin-Zenenberg oversaw the transplant, which is most effective for sickle cell patients under 16.

"The younger the patient who is the recipient and the younger the donor is better," said Rifkin-Zenenberg.

Black and brown children are disproportionately more impacted by sickle cell anemia than white children.

According to the Centers for Disease Control and Prevention, one in 13 Black or African American children are born with the painful, life-shortening disease.

Tobi's message to other kids with sickle cell anemia: "Don't be scared."

The hospital and Tobi's parents are raising money to hire a nurse navigator to help other families impacted by sickle cell anemia and arrange curative therapy.