The Valerie Fund has pediatric sickle cell programs at each of our centers. Our program at Newark Beth Israel Medical Center is the largest in the state of New Jersey with nearly 500 infants, children and young adults, with another large program at our Voorhees, NJ Center, part of the Children’s Hospital of Philadelphia system.

What is sickle cell?

Sickle cell is an inherited disease. It is not contagious, and a person who is born with sickle disease cannot “grow out of it.” Although most people think of sickle cell as a disease that strikes African-Americans exclusively, it also affects a small percentage of people of Hispanic, Latin American, Indian, and Mediterranean descent, where it can appear as a related disease called thalassemia. The State Department of Health now tests all newborns in New Jersey for these diseases.

In patients with sickle cell disease, blood cells mutate from the normal, round shape into cells shaped like sickles or crescent moons, in a process know as "sickling." These sickled cells become stuck in blood vessels. The result is blocked blood flow and severe pain, as well as damage to organs, muscles, and bones.

What happens to children with sickle cell?

Most children with sickle cell disease feel and look fine most of the time. When they do have medical problems, they can become sick very quickly and with little warning. Early recognition and treatment are extremely important because babies with sickle disease are at risk of developing life-threatening infections and other health crises.

The complications of sickle cell disease—both the painful and the life-threatening—cannot reliably be completely prevented. Even children who “follow all of the rules” about dressing warmly, drinking plenty of fluids, and not over-exerting themselves may still suddenly develop excruciating pain crises, acute chest syndrome, or strokes. Most of the medical care involves treating or—preferably—preventing flare-ups. This means that one of the most important aspects of caring for these children is educating families about the illness and how to prevent crises.

What can you do to help children with sickle cell?

There are two things that you can do to help.

First--Particularly if you are African American or Black, or if you are Hispanic, Indian, or from a Mediterranean country, you are in a special position to help children and adults with sickle cell by donating blood.  Blood transfusions are required in the treatment of sickle cell and thalassemia patients. Matching blood between donors and recipients is most likely within ethnic groups. In response to this need, The Valerie Fund Sickle Cell Leadership Council works to raise awareness of the disease and increase the critically low number of African-American blood donors in New Jersey through its RED IS THE NEW BLACK Sickle Cell Awareness Blood Drive Events

Second—You can help us expand services for our Sickle Cell Program to ensure that patients and their families receive sufficient one-on-one care and education with your donation. We hope to raise funds that will allow us to provide dedicated nursing and social work services at our largest program in Newark—this is particularly important for our newly diagnosed families and also for adolescents and young adults who are heading toward independence and will need to manage their own health and health care.

If you could like to learn about specific funding opportunities for this program, please contact Lori Abrams at (973) 761-0422 or LAbrams@TheValerieFund.org.