Meet Madison, with rare Diamond Blackfan Anemia

 SONY DSCWhen Aimee went into labor a few weeks early, she immediately went to Chandler Regional Medical Center. At the hospital, she was told that the baby was in distress and an immediate caesarian section was necessary. Aimee heard Madison’s cries when she was born, but became more concerned when they didn’t bring the baby to her. Doctors told her that Madison was taken to the Neo-Natal ICU (NICU) because her white blood cell count was severely low and she was at risk for getting an infection. A day passed before she was able to hold her newborn.

Aimee was released from the hospital after a week, but Madison stayed in the NICU for another eight days. The family was relieved to finally bring her home. Madison was not eating well and was extremely pale, so they rushed her back to the emergency room two weeks later. She was admitted to the Pediatric Hematology/Oncology unit for more extensive testing.

Madison immediately received a blood transfusion because her red cell count was severely low. Medical personnMadison-quote-200x69el also performed a bone marrow biopsy and more blood tests later that day. Then her family heard the diagnosis: Madison has Diamond Blackfan Anemia (DBA), a blood disorder where the bone marrow does not produce any red blood cells. Madison needs regular red cell transfusions to keep her body functioning normally.

Madison also has other health concerns from DBA, including a heart defect and neutropenia, a low white blood cell count that leads to a weakened immune system. The most serious complication for patients like Madison is iron overload. Her body cannot eliminate the extra iron from the blood transfusions, so she must take daily chelation therapy to avoid damage from the extra iron.

Madison-pop-200x108“Blood donors deserve medals for their lifesaving actions,” Aimee said. “I’m so thankful for people who donate regularly because they understand that the need for transfusions is constant.”

Now an active five-year-old, Madison makes regular trips to receive her red cell transfusions about every three weeks, which means that she has received blood from more than 90 donors so far. Madison lives with her family in Chandler.