Services provided include:
Newborn Screening
By State Law, all babies are tested at birth for a variety of genetic traits and disorders, including sickle cell disease,
sickle cell trait and their variants.
Parents, if you receive a letter with an appointment from this Foundation, PLEASE KEEP IT. It is very important that you know the results of your baby’s test and receive counseling from one of our qualified staff. The test results are confidential; therefore, this information has to be given to you in person.
Genetic Screening and Counseling
Genetic screening involves a special blood test to identify persons possessing certain genotypes that:
1) are already associated with some form of sickle cell disease or a predisposition to the disease; and
2) may lead to the passing of the disease to their children.
Hemoglobin is a protein in red blood cells which carries oxygen from the lungs to other parts of the body. People with “normal” hemoglobin have received two normal hemoglobin genes—one from each parent. However, people who inherit:
1) gene for normal hemoglobin and 1 gene for sickle hemoglobin have sickle cell trait.
2) genes for sickle hemoglobin have sickle cell disease.
When one parent has sickle cell trait and the other has normal hemoglobin, there is a 50% chance that each of their children will have normal hemoglobin and a 50% chance that each child will have sickle cell trait.
When one parent has sickle cell disease and the other has normal hemoglobin, all of their children will have sickle cell trait.
When both parents have sickle cell trait, there is a 25% chance that each child will have normal hemoglobin, a 50% chance that each child will have sickle cell trait, and a 25% chance that each child will have sickle cell disease.
When one parent has sickle cell trait and the other has sickle cell disease, there is a 50% chance that each child will have the trait, and a 50% chance that each child will have the disease.
When both parents have sickle cell disease, all of their children will also have sickle cell disease.
The only way to know for sure what genotype you are carrying is to be tested. The blood test and follow-up genetic counseling are provided free of charge by the Foundation, and the results are confidential.
Nurse Case Management
Nursing case management involve the coordination of services to ensure that persons with sickle cell disease and their families have timely access to services. The specific array of services provided by Foundation case managers includes, intake and assessment, service planning, information and referral, monitoring and follow-up. These services are provided by licensed nursing and social work personnel. Please call Preston Anderson, RN for assistance @ 803-467-9899.
Client, Professional and Community Education
The Foundation provides education information through health fairs, workshops, and seminars to the community at large, as well Health Education presentation in…
• Elementary and High School class room settings
• In service for Teachers and Nurses
• Teacher-Parent consultation, i.e., IEP and 504 Plan
• On-going resource for student and family living with Sickle Disease
The intent is to enhance the understanding of the group of related sickle cell disease so that sound prevention and intervention strategies and programs can be developed and implemented. Call the Foundation to schedule an educational program for your church, business, community or professional organization.
Adult and Parent Support Group
The Foundation encourages and facilitates Support group meetings for clients with sickle cell disease. The purpose of the support group is to provide an environment where clients, parents of children, and caregivers of persons with sickle cell disease can come together to share their concerns and identify and seek solutions to problems and issues they have that are related to this disease. If you are interested in attending a support group, please call your local office.
Little Wonders (Children) Support Group
God’s Little Wonders Club provides a positive outlet for children with sickle cell disease. Our primary goal is to be responsive to the specific needs and desires of children five through twelve (5-12) years of age. The group also strives to provide opportunities for parent/child bonding, enrichment and exposure to cultural, educational and recreational activities. The sessions have proven to be very successful in meeting the needs of those who participate.
Hospital Visitation
Through our in-house hospital and volunteer liaison, once a quarter per client, the Foundation provides visits to give encouragement, gift bags of toiletries and a description of benefits that are offered by the Foundation.
Emergency Client Assistance
The Foundation provides assistance with their electric bills, water bills, and transportation for doctor office visits and prescription medications pick-up. Clients must be actively enrolled in Nurse Case Management.
Victory Junction Camp
Enriching the lives of children living with chronic or life threatening illnesses by creating camping experience that’s memorable, exciting, physically safe and medically sound. The purpose of the Victory Junction Camp is to offer a camping experience to children who, because of their medical condition, are unable to attend a regular camp.
Back to School Bash
This event ensures that our clients will have the school supplies they need to begin a successful school year.
The Giving Tree
A Christmas project sponsored by the Foundation and Palmetto Health which serves children and their siblings who are affected by sickle cell. Children in Columbia and rural counties of South Carolina are given toys that are collected at Palmetto Health and surrounding schools and businesses in the area. Our goal is to collect 500 or more toys so that every child can receive three or more gifts.
Referral for Appropriate Services
Financial Support to Research