My husband and I found out that our son has sickle cell disease when he was 3 months old. The newborn screening performed in our local hospital upon his birth identified that Braden has Sickle Cell Hemoglobin C disease. My husband has the trait and I have an abnormal Hemoglobin C. I (mom) had no idea of our son’s chances of having sickle cell because I had no idea of my or my husband’s genetic status. Needless to say, we had a very deep learning curve.
The majority of our education of this disease came from our son’s hematologist, pediatrician, our local Children’s hospital and its foundation and Google. I tried to learn as much as I could in order to appropriately advocate for my son. There were very stressful times throughout our journey, trying to understand and discern if his symptoms were sickle cell related or just normal childhood ailments. A fever of 101 degrees F, was a required Emergency Department visit. For the first 5 to 6 years of his life, he was hospitalized multiple times per year for mainly infection issues. He is prone to pneumonia and has battled it numerous times. In 2015, he was diagnosed with acute chest syndrome and it nearly cost him his life. That was the most scariest time of our lives with Braden.
We are blessed to still be able to tell our story with Braden with us. We are still learning as much as we can and through this organization, hope to spread awareness about this disease, hope to be able to advocate for Braden as well as other children and adults who suffer from this disease and to listen to our warriors and their caregivers as they share their stories. We want to empower our sickle cell warriors!