Meet: Living with Sickle Cell RVA
More than two million people currently carry the Sickle Cell Trait here in the United States. Approximately 100,000 Americans currently live with Sickle Cell Disease in the United States and over two million live with the disease worldwide, a huge increase from just ten years ago. A great number of individuals affected by this disease live here in the Greater Richmond area, including more than 300 kids..
As a mother of two of those children I’ve seen its devastating effects firsthand. I found out my son Jadien (who is now six) had Sickle Cell Disease while in the NICU as a result of being born prematurely due to a stroke he suffered in utero. I remember feeling shocked and confused. I wondered what that diagnosis meant for him and for our family. It didn’t take long to find out. At the age of seven months Jadien had his first pain crisis. He suffered for several days because, in my inexperience, I thought he was just fussy. It was at that first emergency room visit that I became really aware of what a life with Sickle Cell would be like. Since then, he has spent much of his of his young life in and out of doctor’s offices, hospitals, labs, and therapy centers. He has suffered near fatal crises including Acute Chest Syndrome and Splenic Sequestrations. He in fact, just had surgery to have his spleen removed. Because his three year old sister, Jaylen, also suffers from this disease I know all too well what it is like to have both of them going through a crisis or being in the hospital at the same time. I know what it is like to be unable to sleep because I’m up checking on them or giving medications in the middle of the night. I’ve had to comfort my other children and wipe the tears from their eyes as they helplessly watch what those two go through, all while wanting to break down myself.
I thought he was just fussy. It was at that first emergency room visit that I became really aware of what a life with Sickle Cell would be like. Since then, he has spent much of his of his young life in and out of doctor’s offices, hospitals, labs, and therapy centers. Dionne Bobo: Living with Sickle Cell RVA
These are things no parent would want to see their child go through. As a result of those experiences I became committed to finding ways to help my children and others LIVE until there is a widespread cure. At LIVING with Sickle Cell RVA, our mission is to “Help kids and families affected by Sickle Cell LIVE through Education, Advocacy & Empowerment”. We’re providing education about both Sickle Cell Trait and Sickle Cell Disease
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to all people including patients, their caregivers, schools, and the community. We’re advocating about this disease and the need for research as we meet people in the street, through social media, speaking to young adults on college campus, and participating in and hosting events like our upcoming Sickle Cell Awareness Walk on September 24, 2016 at Virginia Union University. We’re breaking and detaching the silent stigma historically associated with Sickle Cell and empowering kids and their families to stand up and speak out. All of these things are vital for helping these kids truly LIVE.