Family of toddler cured of sickle cell spread the word about treatment

Approximately 3,000 children in New Jersey suffer from sickle cell disease.

Naomi Yané

Oct 7, 2023, 2:39 AM

Updated 262 days ago

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Approximately 3,000 children in New Jersey suffer from sickle cell disease. For kids with the disease, it can mean missing out on the best parts of childhood because of the pain and side effects associated with the illness.
Tobi Okunseinde is 5 ½ years old. He beat sickle cell disease through a curative transplant at Joseph M. Sanzari Children's Hospital and now his family wants to pay it forward by spreading the word and helping other families facing the illness through Tobi’s Nurse Navigator.
The Okunseindes say once they learned about curative transplants, they were all in. Akua Okunseinde is Tobi’s mom.
"Once we found out that there was an option for him to have a transplant to be cured, I was just laser-focused and just getting through those steps and working with the teams to make sure it happened because I knew there was light at the end of the tunnel,” she says.
Tobi is cured today, thanks to his baby brother Kwasi who was a sibling match, making him an optimal donor for Tobi’s transplant. Folu Okunseinde, Tobi’s dad, said this technology was life-changing.
“For a match sibling, it’s a 90% success rate, which is amazing. Even if you don’t have a match sibling, if you have a parent donate, or another sibling donate, you can still have an 80% success rate,” Folu says.
Both Akua and Folu have the sickle cell trait, and at 18 weeks pregnant with Tobi, the sickle cell diagnosis was confirmed and 9 months post-partum, Tobi had his first sickle cell-related crisis.
"I certainly remember the first time we saw Tobi in pain,” his dad said. “I remember the first time we were in a hospital room; Tobi was just over 1 and they told us we had to put him on morphine as a baby.”
Younger brother Kwasi matched 11 genetic markers and was able to donate bone marrow to his brother. In April of last year, Tobi started a transplant protocol and by August, the toddler was cured of sickle cell.
Dr. Alfred P. Gillio, director of the Children’s Cancer Institute at Joseph M. Sanzari Children's Hospital, was Tobi's doctor.
"Even though they’re HLA match, he could still reject that marrow if we didn’t give him some chemotherapy. The chemotherapy has two reasons. One is to immuno-suppress and two is to make room for the new cells and to get rid of Tobi’s diseased cells,” Gillio says.
Gillion says the chances of Tobi rejecting the graph are one in 1,000.
“Joseph M. Sanzari Children's Hospital is the only hospital in New Jersey that is doing curative therapies,” said Folu. "In 15 years, they’ve done 45 transplants. That’s it.”
The Okunseindes want to change those numbers by sharing their story and letting other families know it’s possible, especially in Black and Latino communities where sickle cell is most prevalent.
The family has launched a fundraiser called Tobi’s Nurse Navigator. It’s a nursing position at Joseph M. Sanzari Children's Hospital. That person would go into communities most affected by sickle cell to inform folks about possible options. They would also help navigate the many specialists a patient would have to see.


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