About Me

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 16 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 over 300 blood transfusions but close to 350 + units of blood. We are very thankful to blood donors taking the time to save a life, just like Mia.

With time and technology, Mia pursued being cured by a Haploidentical Bone Marrow Transplant in Tucson, AZ / She was admitted to Diamond Children's Medical Center Feb. 28th 2023 and went through a protocol to destroy her immune system, and receive her sister Maddy's stem cells on March 9th 2023. Mia has never made a retic (baby red blood cells) on her own before, and is now currently making her OWN red blood cells for the first time in 20 years, thanks to her bone marrow donor sister Maddy. 

In March of 2013, Mia, her three sisters, plus mom and dad were blessed with a Make a Wish Trip to Hawaii!! Click here to see how fabulous it was! We have some great memories together as a family.

Click Here to read how Mia is a Blood and Bone Marrow Activist. Click here to see how she needs your help to live.