Our Reasons for Starting Tapestry is bigger than any one person...But first...
WHAT IS SICKLE CELL DISEASE?
Sickle cell disease is an inherited blood disorder.
Sickle cell is a genetic, lifelong disease caused by an alteration in a gene that affects a person’s red blood cells. Learning about the role that genes play can help you and your loved ones better understand what causes the disease and its symptoms.
Pete D. Stevens, our founder and Executive Director's youngest brother, was diagnosed with sickle cell hemoglobin ss disease at four-years old. Since then, we have endured many hospital and emergency room visits, surgeries, joint replacements, blood transfusions, fatigue, swelling in extremities, chronic pain, and unpredictable pain crises. At the time of Pete's diagnosis, none of the other children were screened for sickle cell. As time went on, each of the children discovered their sickle cell status. What happened to Pete, affected everyone in his family.
"If this happened to my family, I would only imagine how often other families had the same experience. this oversight of not having the children in a family tested was repeated in other families. Although newborn screening came about in the 70s and 80s, we believe parents and children need to be aware of the sickle cell trait, potential complications that impact lifestyle decisions, and make connections to support and improve the quality of life. This propelled me to establish Tapestry Connections in 2017, as a community-based sickle cell awareness organization."
-----Dr. Deloris Mitchell
Founder & Executive Director
Tapestry Connections, Inc.
Tapestry Connections was birthed out of the fact that no one person is only in this world. Retired Chief Justice Saundra Day O’Connor said, "We don’t accomplish anything in this world alone; whatever happens is the result of the whole tapestry of one’s life, all the weavings of individual threads from one to another that creates something."
Living with sickle cell can be a challenge every day. Peter Stevens lived to be 63 years old. He beat the projected age of 40, which did not happen by chance. He took time to understand his disease and to advocate for himself. He created a wellness plan and stuck to it. He was intentional. People with sickle cell can live productive lives if they are proactive in their care. Tapestry Connections continue to spread awareness and educate the community and surrounding areas. Our motto reflects our passion for this movement as we connect hearts and minds in love and life in the fight against sickle cell disease.