The Bleeding Disorders Foundation of North Carolina's mission is to improve the quality of life of persons affected by bleeding disorders through advocacy, education, promotion of research, and delivery of supportive programs and services. This is our 6th year to participate in the Family Festival & Walk as team Charlie's Troopers! We love supporting this event and helping to raise funding for this amazing organization!  They are truly achieving what their mission states.  We appreciate all they do behind the scenes to spread awareness and advocate for families like us in so many ways. We are thankful to have a community of people who share in this unique aspect of Charlie's life.

(Photo: Our first Family Festival in 2017)

Charlie was diagnosed with Severe Hemophilia A shortly after birth.  We had no family history of this genetic disorder, so this was quite a surprise for us.  There are approximately 400 boys born with hemophilia each year and 1/3 of those cases are families like us with no previous history! We were thrown into the world of bleeding disorders and had to learn quickly! We are thankful that we found such great resources available and had many opportunities for education to help us provide the best care we could for Charlie.  We were able to connect with a Hemophilia Treatment Center and find doctors that specialized in the care of bleeding disorders. We want to make sure that these opportunities continue to be available to everyone.  

(Photo: 2016 Charlie at 6 months old waiting to go in for his port placement surgery. He needed to start regular infusions of factor and his veins were not accessible, so we decided on a port for ease of treatment and the ability to treat him at home) 

We have seen advancements in the care and treatment of Hemophilia even in Charlie's 6 years.  A few years ago, Charlie was able to start a new medication that was subcutaneous, just a small shot into the skin, rather than needing to be intravenous. He was able to have his port removed before starting kindergarten and went from needing infusions of factor every other day to needing a shot every 2 weeks. Spreading awareness of bleeding disorders and sharing our stories contributes to the ongoing research and advancements in the quality of life for everyone. Hemophilia was a very different diagnosis in the past. We are thankful for those who went before us who helped pave the way for Charlie to live a healthy and active life! He enjoys soccer, basketball, swimming, riding his bike, hiking and generally being as active as a 6 year old boy could possibly be!