Mia was born with a very rare bone marrow failure disorder called: Diamond Blackfan Anemia.
DBA is a rare bone marrow failure syndrome disorder where the body does not produce any red blood cells. Red blood cells are vital to the body as they carry and deliver oxygen to the body tissues via blood. People with DBA have symptoms common to all other types of anemia, including pale skin, extreme sleepiness, fatigue, rapid heart beat, and heart murmurs. There is no cure.
After a routine doctor appointment, that was moved up due to changes in medical insurance, the nurse thought Mia looked 'pasty' and sent for a blood draw stat. By the time we got home, there were 5 messages on the answering machine pleading me to please take Mia to the ER right away as she had a hemoglobin of 2.3. This was on November 26, 2002 the Tuesday before Thanksgiving. I told the front desk person Mia has a hemoglobin of 2.3 and they immediately took her back for an immediate blood transfusion, she was so low that they gave her almost two units of blood as a tiny baby. It saved her life. Mia would not be alive right now thanks to generous strangers who donate their blood.
After about three months the diagnosis of DBA was confirmed and the doctors also told us that she had Turner Syndrome as well, found through a karyotype (chromosomes). TS is unrelated to DBA and it occurs in about 1 in 2,500 girls. Having both of these disorders has been difficult and requires MANY doctor appointments, but Mia continues to shine through it all.
Mia has survived thanks to the kindness of strangers who donate their blood so she can live. These blood transfusions are life sustaining. Mia receives packed red blood cells every 3-4 weeks and has for the past 19 years. (Except when she responded to steroids but got really sick and we couldn't get her on a low dose again.) To date, Mia has received 225 blood transfusions but close to 300 - 400 units of blood. We are very thankful to blood donors taking the time to save a life, just like Mia.