Thirteen-month-old Sophia Stagnitta, of East Syracuse, will grow up receiving blood transfusions.
Little Sophia was diagnosed with Beta-Thalassemia Major, also known as Cooley's Anemia, when she was 11 days old, her mom Jennifer said last week at Skaneateles High School. Jennifer and Sophia were in town for a blood drive being held in Sophia's honor at the school where her dad, Scott Stagnitta, is a middle school teacher.
Beta-Thalassemia Major is a genetic blood disorder that prevents or greatly reduces the body's ability to produce adult hemoglobin and causes anemia, which is a lack of iron.
Jennifer said Sophia thankfully has not had to have any blood transfusions yet, but each month the family goes to University Hospital's Pediatric Hematology/Oncology department to have the toddler's hemoglobin level tested.
"Her hemoglobin level has been up and down, but in the normal range," Jennifer said.
While Sophia's levels have fluctuated between 10 and 11, once the levels drop to a 6 or 7, she will need at least one transfusion each month. But with transfusions also come more concerns as receiving blood can cause an iron overload, which in turn will mean Sophia will have to endure therapies to remove iron from her blood. The two methods of removing iron are either through taking a pill orally, but not everyone can take it, or through a method called Chelation Therapy, which requires a needle to be inserted into the body to aid in removal of heavy metals.
"The only way to cure this is a bone marrow transplant," Scott said, but even then the marrow has to be an identical match from a sibling.
The entire process for a bone marrow transplant would be seven months or more.
"If we were going to do it that way, they want to do it while she's young," Scott said.