Families of those with sickle cell disease in Philadelphia area hope and advocate for a cure
Three-year-old Kaliph Eubanks is full of happy energy playing at the park in the Germantown section of Philadelphia. He also has sickle cell disease.
Thursday marked World Sickle Cell Awareness Day, which focuses on supporting families and encouraging more research on the most common genetic disorder in the United States.
"He looks normal one minute and then the next, something is wrong," Kaliph's mom, Antoinelle Whitmore, said. "You're always on the edge. You never know."
Whitmore said her son has a mild case of the genetic disorder, which causes blood cells to become sickle-shaped. The cells then pile up and prevent oxygen delivery around the body, causing debilitating pain.
Zemoria Brandon lost her husband to sickle cell disease. Now she works with Philadelphia's Sickle Cell Disease Association, which is raising awareness by lighting buildings in red this week.
"It does affect people of African, Caribbean, Latino ancestry in the greatest numbers. But there are other groups … that are also affected in smaller percentages. So we just want to make sure that people know …it has a global impact," Brandon said.
"The research is ongoing, and we're looking and hoping for a universal cure," Brandon said.
Kaliph's mom said he's lucky so far to have only needed one blood transfusion. She lives in fear, but she's hopeful more awareness and research will lead to better treatments that are more accessible
"I want him to reach for the stars. I want him to be his true authentic self," she said. "I want him to be the vibrant person he is now and not let anything hold him back."
For people with severe cases of sickle cell disease, there are bone marrow transplants, and CHOP has developed a gene therapy.
