Children at camp, smiling faces, wiggling bodies moving to the beat of the latest dance, that's what you see from Camp Crescent Moon, it's our way of looking on the bright side of sickle cell disease, it's our way of being in denial. But today we have to tell you what many of you already know, "sickle cell disease is no joke, it can be a cruel, relentless, destructive disease".
The Christmas season has begun and the Sickle Cell Disease Foundation of California is participating in its annual toy and gift card drive. I'm going to tell you about three families who will have a very difficult time this Christmas. No amount of toys or good wishes will lessen their grief for they have lost a loved one to sickle cell.
The first family lost their six-year-old son. He was to receive a bone marrow transplant from his baby brother. Luckily the young brother was a match and the parents and doctors thought that the transplant would spare their son from the ravages of the disease, the pain crises and potential strokes. During the transplant something went wrong and after 27 days of pain and fever the child died.
The second family had brought their son through the difficulties of childhood and adolescence. He had begun to live on his own, but like many young adults with sickle cell, he died after the transition to adult care. Like many young adults, he thought he was invincible. He died at twenty-three.
The last family is that of our CEO Mary Brown. Her brother-in-law, Wayne Ragin has just lost his battle with sickle cell disease. Wayne was a graduate of Howard University and worked as a human resource specialist. He had three children, all college grads and worked as much as he could on the Obama 2008 campaign. Although he was able to lead a successful life, the last seven years have been crippling. Sickle cell disease can destroy every organ in the body and in Wayne's case it was his kidneys. He suffered through years of dialysis, both at home with his wife Patrice his caregiver, and at the hospital. The final assault came from a stroke and then cardiac arrest.
Other families are breathing a sigh of relief this year. The surgery to remove the spleen went well for one nine-year-old, and he is able to go longer between transfusions. Another young woman is doing well after her third hip replacement and literally months in the hospital and ER.
This is the good news but we have to ask, was there anything that could have lessened the suffering and lengthy hospital stays? Are we devoting enough time and resources to develop new treatments that can reduce the devastation of this awful disease? We ask ourselves these questions at the Sickle Cell Disease Foundation of California.
We want to
1st Vice Chair
Chair of the SCDFC Advocacy Committee
Sickle Cell Disease Foundation of California