How A Five-Year-Old Was Cured Of Sickle-Cell Anemia. – ‘Definitely saved his life.’
by Trisha Leigh
There are countless diseases in the world and only so much research money to go around – but for everyone who suffers from sickle cell leukemia (or loves someone who does), a huge breakthrough has happened.
The NIH defines sickle cell disease as follows:
“Sickle cell disease is a group of inherited red blood cell disorders that affect hemoglobin, the protein that carries oxygen through the body. Normally, red blood cells are disc-shaped and flexible enough to move easily through the blood vessels. In sickle cell disease, red blood cells become crescent- or “sickle”- shaped due to a genetic mutation. These sickled red blood cells do not bend or move easily and can block blood flow to the rest of the body.”
This can lead to serious health problems, like stroke, infections, and pain disorders that general lead to a shortened life expectancy.
It impacts a disproportionate number Black and brown children and has no known cure, which is why Tobi Okunseinde’s parents were devastated to get the diagnosis before their son’s first birthday.
He suffered through treatments like chemotherapy, all with very little hope that a normal, long life lay ahead.
That is, until they learned about a curative therapy that required a bone marrow transplant from an optimal donor – and also learned their younger son, Kwasi, was a match.
Folu, the boys’ father, is grateful for this little miracle.
“He definitely changed his life. He definitely saved his life,” he says of the therapy’s success. “Once we found out about curative therapy, the bone marrow transplant, we knew there was a light at the end of that tunnel.”
Now, a year after the bone marrow transplant, Tobi is officially “cured.”
“Going to kindergarten as just a ‘regular kid’ has just been the most fantastic experience,” his father said.
Dr. Stacey Rifkin-Zenenberg, the pediatric hematologist at Hackensack Meridian Health’s Joseph M. Sanzari Children’s Hospital, oversaw the transplant.
“Forty percent of patients who have sickle cell have available donors for transplant. The younger the patient who is the recipient and the younger the donor is better.”
Tobi’s parents are working to raise money for other parents looking to explore the possibility of this curative therapy.
So now there is hope, though, and the results are plain to see.
Sometimes that’s all people need to get through another day.