September is Sickle Cell Awareness Month and children and adults who beat the illness through marrow transplants and gene therapy at Hackensack University Medical Center were joined by their families and doctors for a reunion and celebration of a cure.
Last year, News 12
introduced you to the Okunseinde family as they shared their toddler Tobi’s journey of being cured of sickle cell through a curative transplant. The family gathered Wednesday night with other families of sickle cell survivors.
"These last couple of years since Tobi’s cure have just been amazing for us. We’ve been able to do so many more things as a family without the stress of sickle cell kind of lurking behind us that whole time,” says Tobi’s father Folu Okunseinde.
Sickle cell disease is an inherited blood disorder, and according to the Centers for Disease Control and Prevention, there are some 5,000 children in New Jersey currently affected by the illness. But only a handful are cured each year despite available treatments.
Adedoyin Adebo was cured of sickle cell.
"I started treatment for sickle cell in 2012 and I was cured of it in 2013. I’m kind of a representation of what it is when it’s a success when the treatment works,” Adebo says.
Dr. Alfred Gillio, from the Children’s Cancer Institute at Joseph M. Sanzari Children's Hospital, says this is the only hospital with bone marrow transplants and gene therapy for sickle cell.
"Now we have a second therapy called gene therapy, which is a little bit easier. You don’t have to find a donor and we use the patient’s own cells,” Gillio says.
Through organizations like Tobi’s Nurse Navigator founded by the Okunseindes and the Tackle Sickle Cell campaign spearheaded by former NFL and Rutgers star Devin McCourty, they hope to spread awareness about the disease and more importantly the cure.
"When myself and my twin brother got into this, maybe 10 or 11 years ago, the landscape was totally different so we were just trying to inspire young people to keep fighting, There’s actual tangible cures out there,” says McCourty.
Since 2002, more than 80 patients, mostly children, have been cured of sickle cell disease through stem cell transplant and gene therapy.
"It's important to celebrate the other sickle cell survivor families and it's really important to bring awareness to sickle cell here in New Jersey,” says Folu Okunseinde.