Mia

Everyone meet Mia

Houston TX - Texas Children's Hospital

Mia was diagnosed at the age of 2.5. She was experiencing high fevers and always sleeping. Mia would flare every 24 days - she would experience a high fever- be rushed to the ER, be admitted , receive a blood transfusion then after a few days released to go home. This happened for several months, always the same way. After a few months Mia’s genetic testing came back as XIAP. We were told there was only 4 known females with XIap/HLH and it was more common in Males. Our girl was rare! We were lucky enough to be enrolled into a clinical trial. On that medicine Mia did well. We found out that trial was coming to an end and lucky for Mia a new trial was opening up. Mia is thriving on this medication. She loves going to see her favorite doctors and nurses bi weekly on treatment days. Mia lives a very normal kid life. She’s a big advocate for blood donation and does a lot of Media work with Gulf Coast Blood Center. Mia donates her hair to other kids who have lost theirs from treatment, and she likes to be involved in all hospital events. She’s turning & on September 10th! We are beyond grateful to her amazing team of doctors and the drug companies who are working hard to keep medications that work for her coming.