A quick but very descriptive video about CTLA4 (Araeya’s genetic disorder):
For Araeya, her overactive immune system caused by CTLA4 has primarily attacked her lungs and digestive system. She now has Interstitial Lung Disease (ILD) and pre-cancerous cellular change in about 85% of her stomach called Metaplasia. For several years, she has been treated with weekly injections and IV treatments to try and keep her immune system regulated, and the inflamation to a minimum. Unfortunately, the treatments are no longer effective. In April, her Metaplasia was at about 5-10%. When they found it went to 85% in September, the doctors were shocked by how quickly it progressed.
They provided two options: 1. Try different medications and hope they were effective, though there was little evidence in other trials they would be. 2. Move forward with the chemotherapy and bone marrow transplant.
As you know, we chose to move forward with option 2. We believe in a mighty God, and strongly feel this is the path that will lead to Araeya being healthy for the rest of her life. We are thankful for His guidance, your prayers/love, and the donor’s selfless sacrifice!
As always, we appreciate you following Araeya’s journey! We also greatly appreciate your prayers for Araeya, our family, the donor, and the donors family!