June 19 was World Sickle Cell Awareness Day, but while more than 94% of children with the disease in the United States live happier, full lives because of early diagnoses and good healthcare; the survival rate of children with sickle cell disease in sub-Saharan Africa sits at an alarming 10%.
Knowing that 225,000 children in the African region are born annually with the disease and live short lives in agonizing pain, a New York mother whose son was born in Kenya with the disease, created a way to reach across a continent and lend a loving hand.
Gail Sealy, whose son Shikuri was diagnosed after Sealy adopted him at age 2, established the Shikuri Project Charitable Trust.
Sealy’s mom learned first hand how much pain and devastation it could have caused her son. But as an American mother, she was able to provide him with the best medical care. Shikuri survived and thrived.
Her family’s personal journey, and the knowledge that others are suffering without the same access to medical care, led Sealy to develop the charity in hopes of raising awareness and money for adequate medical care for children with sickle cell in sub-Saharan Africa.
Sickle cell disease is a life-threatening disorder of the red blood cells that can lead to other conditions like stroke, sepsis, pneumonia, kidney failure or chronic pain. Pain and symptoms are only minimized by correct diagnosis and timely treatment.
The hereditary condition is the most common genetic disease worldwide. It is estimated that 500,000 children are born every year with the crippling condition; 250,000 of them die before age 5 largly because of lack of access to good medical care.
“Diagnosis is so important in helping to minimize the pain of this disease. And anyone who has seen a child with sickle cell suffer in pain understands the heartbreak of this condition,” Sealy said in a press release. “By raising funds we can provide medication and diagnostic equipment, education for families and communities, and systems for communities to help manage this disease that will make such a difference in the lives of these children.”