Friends of Karen currently supports eight families whose child is in treatment for Sickle Cell Disease.

September is Sickle Cell Awareness Month and Friends of Karen is marking the month by shining a light on the illness and how we support children with Sickle Cell Disease (SCD) and their families. Two percent (8 children) of the children we serve currently are being treated for SCD, which is a group of inherited disorders that distort red blood cells from their typical round shape into crescent, or sickle, shapes. According to the Centers for Disease Control, these misshapen blood cells can get stuck inside blood vessels leading to episodes of severe pain, serious infections, stroke, or organ damage.
Friends of Karen’s Family Support Program offers children with SCD the same comprehensive services it provides to children with cancer and other life-threatening illnesses. SCD has typically been a chronic illness that is managed over a lifetime.
However, with stem cell transplants and gene therapy there is now hope for a cure. These procedures are difficult as chemotherapy is required beforehand and there are many side effects of the treatment. Stem cell transplants require a donor that must be a matched related donor that is often a brother or sister. Friends of Karen’s Sibling Support Program is vital in providing education and support to siblings and the rest of the family.
“Friends of Karen is the only organization that provides comprehensive assistance to families with a child being treated for Sickle Cell Disease,” Rhonda Ryan, LCSW, Director of the Family Support Program noted. “We provide both emotional and financial support to the family, so they are able to cope and remain as whole as possible. Friends of Karen social workers, child life specialists and creative arts therapists are there for the family during the child’s transplant and gene therapy, and to ensure they have the resources and support they need.”