Kamryn Dukes, called Kami for short, is a warm, eloquent and motivated 11-year-old whose dream job is to become a professional singer and actress. She also wants to become a scientist.
Kami and her family lives in Oklahoma City, and she loves attending school, but her lifelong illness – sickle cell disease – has repeatedly caused her to miss half of each school year due to her symptoms.
“Kami has had well over 100 days in the hospital,” says her mother Ayeisha Dukes. “Even when not receiving inpatient treatment, she has debilitating pain almost daily, constant fatigue, and is limited greatly in regular daily activities.”
As a result, her parents now homeschool her.
“This was a difficult transition [for Kami] because she loves school and misses her friends terribly,” says Dukes. She adds that the activities of the school day often helped distract Kami from her chronic discomfort.
Kami has had a rough course since birth, Dukes explains, with her first hospital admission at only a few weeks old. Her first surgery was at 10 months old.
What is sickle cell disease?
The hallmark of sickle cell disease are pain crises, which occur because red blood cells that are normally round and disc-shaped are instead crescent or sickle-shaped due to abnormal hemoglobin. Since these cells are not flexible, they can stick to the walls of blood vessels, causing blockages that stop the flow of blood to organs or tissues, causing pain.
This inherited disease affects 100,000 people in the United States alone, predominately affecting African-Americans, Latinos and other minority groups.
Until recently, the only treatment for sickle cell disease was to treat the symptoms or prevent crises and infections. There hadn’t been a new treatment for sickle cell disease in decades. Recently, the FDA approved a new medication, called Endari, to decrease the number of pain crises and hospitalizations for those with sickle cell disease.
In addition to the usual treatment plans, there is now a chance at curing patients of sickle cell disease once and for all.
Transplantation as the answer
“We decided on a [bone] marrow transplant because it is the only cure for sickle cell disease currently,” Dukes says. “We could not accept that this was going to be her quality of life for the rest of her life.”