Aaron was born with a life threatening disease call Sickle Cell. She has been battling this disease since birth. By 11yrs of age, she had endured Acute Chest Syndrome, 3 strokes with therapy for recovery, chronic blood transfusions every 3 to 4 weeks, treatment for iron overload, and meningitis, countless hospitalization and doctors and clinic visits.
Sickle cell disease is an inherited blood disorder that causes pain, organ damage and early death. It is most prominent in Africa where an estimated 120,000 infants are born each year with sickle cell disease. Of the approximately 80,000 persons who have sickle cell disease in the U.S most are of African descent.
Sickle cell disease is an inherited disorder. Both parents must have at least one sickle cell gene and pass it on to their child in order for the child to have sickle cell disease. Approximately one in every twelve African-Americans has the sickle cell trait--one sickle cell gene. They are carriers of the disease, but are not afflicted by the disease. If two persons with the sickle cell trait conceive a child, there is a 50 percent chance the child will inherit the sickle cell trait, and a 25 percent chance that he will have sickle cell disease.A Cure for Aaron
Bone marrow transplants offer a potential cure for children with sickle cell disease. They are considered only for children younger than 16 who have:
Severe sickle cell disease complications, including repeat strokes, episodes of acute chest syndrome, and painful events.
An available donor (a healthy brother or sister who has matching bone marrow).
No significant damage to major organs.
About 1% of people with sickle cell disease meet the criteria for bone marrow transplant.If successful, a bone marrow transplant can cure sickle cell disease. Although only used in select cases, it is successful in nearly 85% of transplant recipients. Another 10% survive, despite transplant complications and/or failure. About 5% percent of bone marrow transplant recipients die following the procedure.
Here in Atlanta’s Children’s Hospital at Elgelston, they have preformed the most successful BMT’s for Sickle Cell in the nation.
Today Aaron is ONE YEAR out of Transplant and she is 100% SICKLE CELL FREE!!!!!!
Aaron’s fight is not over! She with her family friends, and supporters has vowed to bring about CHANGE through our
NEW ORGANIZATION
We have heard from frustrated parents, medical professionals and staff, who want to see an organization not afraid to tackle the problems, and are willing to tear down the brick walls we have put up around ourselves. We can be that organization!
It’s our hope to build new, creative and innovative ways of bringing about awareness, resources and support systems. Most of all, how to change the way society and we ourselves, views this disease, that not only effects over 80,000 Americans, but millions around the world.
We understood that this would take more than 2 voices to bring about CHANGE. We must all join our voices and step off our little islands, to tell our stories and the trials we face every day with this disease.
We understand that SC is not a disease that symptoms and conditions are the same in everyone. How it affects each family, as a whole is different. It would be impossible to make a broad stroke across everyone affected by this disease and put them in a box. What works for one, will not work for all.
We need the young, the old, our community leaders, medical and business professionals, entertainers, celebrities, pro athletes and you, the families affected by this disease to share our vision, lift our voices, tell our stories, share our talents and time, and most of all, our FUNDS and resources.
We need "OUT OF THE BOX†thinkers and visionaries with new strategies to address our many different needs. The most important, a CURE for ALL!
Those of you who want to stop speaking and hearing about the problems and want to hear and bring about solutions, join us at the table.
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