Sickle Cell Disease affects the African American community, with our community representing 90% of those living with the condition. About 1 in 13 Black babies are born with this blood disorder as this condition alters the structure and functionality of their red blood cells, impacting their journey through the circulatory system and resulting in a range of health challenges.
In light of World Sickle Cell Awareness Day, we spoke with Chris, a devoted St. Jude Children’s Research Hospital parent. Chris is the father to two daughters with Sickle Cell Disease, and following their diagnosis, he joined St. Jude as a full-time employee in their pathology lab. He is determined to find a cure for the disease that impacts his daughters and countless other children, and he has become an integral part of the St. Jude community. Today, he gives us a glimpse into his journey.
BHM: Could you share a little about your daughters?
Chris: I have two daughters with Sickle Cell Disease, Khirsten and Kaitlyn. They are both high-spirit souls who love to be outside and have as much fun as possible in a day!
BHM: What was your family’s journey after your daughters were diagnosed with SCD?
Chris: Our journey started with very little information and knowledge about Sickle Cell and no problems in the first five years of their life. After that, my wife and I started shifting into overdrive, trying to figure out how we could help in our own way along with St. Jude.
BHM: How do you manage to be a supportive father while also managing the challenges that come with your daughters’ SCD?
Chris: Being a father of three daughters is a job all in itself! Having two with Sickle Cell is what I call EXTRA. Normally, we see extra as a good thing, but it was a big challenge for my family and me. It wasn’t easy, but we have learned to adapt to the life God said we could handle!
BHM: How do you advocate for your daughters within the healthcare system, and what advice would you give to parents in similar situations?
Chris: Well, some of what we have learned comes from other parents who have been down the road while we were traveling. We also learned that asking questions can sometimes lead to other deeper questions that you might not want to hear and accept. This, too, is part of the journey. As parents, my wife and I want our children to be “in the know,” as some people would say. We would get information and try to break it down for our girls so they can, in turn, know what to ask as they get older to advocate for themselves. My Wife and I tell other parents about beginning their journey: Don’t be afraid to ask questions! Ask as many questions as possible; if you don’t know what to ask, that’s okay for now. Get as much information as you can! The questions will come. You are your child’s BIGGEST advocate and best hope! Your child is looking at you for all the answers! As parents, that is what we do!
BHM: Why is World Sickle Cell Awareness Day important to you? How can awareness improve the lives of those with the disease?
Chris: Sickle Cell Awareness Day is not well-known enough! To this day, we still have people who haven’t heard of Sickle Cell Disease; we all have heard about cancer. Information is the key to understanding, and understanding brings results! In our conversation with Chris, we gained valuable insights into the realities of living with Sickle Cell Disease from a parent’s perspective. If you are a parent out there trying to manage your child’s sickle cell diagnosis, never be afraid to ask too many questions, and remember that you are your child’s biggest advocate. It is okay not to have the answers to everything but to gather as much information as possible.
In recognition of Sickle Cell Awareness Day, let’s put forth a collective effort to support those affected by the disease and promote understanding the disease. With increased awareness, we have a better chance of finding a cure.
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