Our Story
Our Journey with Braden’s Sickle Cell Diagnosis
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.
Our Educational Journey and Challenges
The majority of our education on 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 scariest time of our lives with Braden.
Meet Braden, Our Inspiration
Meet Braden! Braden enjoys being a part of The B Strong Group. He loves all sports, especially football and basketball. He loves gaming, the arts, and his family and friends. He now attends the University of South Carolina, where he majors in Computer Engineering.
Braden has enjoyed being the inspiration behind The B Strong Group. He likes volunteering and sharing information about our organization. He has had opportunities to present in forums virtually and throughout the country.
Braden has Sickle Cell Hemoglobin SC Disease. It is the second most common type of sickle cell disease. It occurs when you inherit the Hb C gene from one parent and the Hb S gene from the other.
Braden loves all sports! He has played baseball and basketball. He loves playing kickball for fun. He loves watching all other sports, especially football, where his favorite professional team is the Carolina Panthers.
He can play sports as long as he stays hydrated and takes frequent breaks. Braden also has asthma so he has to make sure his breathing is good, as well.
Our Mission, Our Purpose
We will advocate for sickle cell warriors, help to educate our community about the disease and help empower our warriors and caregivers through sharing their stories and volunteering.
We are committed to sharing the importance of blood donation by constantly urging our community to donate blood for our warriors. The need is constant.
Educate. Advocate. Empower.
Advocacy for Sickle Cell Warriors
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 listen to our warriors and their caregivers as they share their stories.
