Ava Leslie

Most of you know our journey, some aren't as familiar but Ava who is now 8 years old was diagnosed with Sickle Cell disease (HgbSS) at approximately 4.5 weeks of age. Hemoglobin SS disease is the most common type of sickle cell disease. It occurs when you inherit copies of the hemoglobin S gene from both parents. This forms hemoglobin known as Hb SS. As the most severe form of SCD, individuals with this form also experience the worst symptoms at a higher rate. Her first hospitalization was at 4 months old where she was admitted for RS V (respiratory syncytial virus) and her first "pain crisis" which was severe pain and swelling in her hands and feet. Ava has been hospitalized over 60+ times (this does not include ER or clinic visits due to her disease). She has had 3 surgical procedures-unplanned due to complications from Sickle Cell including: Splenectomy (removal of the spleen), removal of the tonsils (tonsillectomy) and/or adenoids (adenoidectomy) and most recently-last year a cholecystectomy, or gallbladder removal including removal of several stones. Ava has also received to date, 4 blood transfusions due to surgeries and because some sudden complications of sickle cell disease cause the body's red blood cell count to drop to life-threatening levels (severe anemia). When severe, these conditions (including splenic sequestration, acute chest syndrome, and aplastic crisis) can be fatal if not treated with blood transfusions.

Ava's journey has been long -8 years and hard but she is a fighter! The only cure for this disease is bone marrow transplantation. However, with this procedure there are many risks and it could potentially be deadly. It is much safer and healthier for a sibling to be a donor however neither of Ava's sister were a match to her. With the risk, we decided to wait after the learning the news 3 years ago. But, now with continued problems we are on a mission to find a donor! This motivated to start: StrongFlower aka #TeamAva as we not only want to spread more awareness of this disease and put a face to it, but also provide different support to other families who are fighting this fight with us. We want to support the local Sickle Foundation of GA, we also desire to provide gas cards and meals to families in the hospital. Another way we want to support this campaign is by creating and selling tshirts for both awareness and profit as we prepare for Sickle Cell Awareness month -Septemer