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Welcome! We know how hard it can be to keep in touch with everyone that we love so we've created this to keep friends and family updated about our lives.
Visit often and write us a note in our guestbook. We appreciate your support as we fight Fanconi Anemia.
Donations are accepted at https://www.youcaring.com/PrayersforJienaandMason. Thank you.
Fanconi anemia, or FA, is a rare, inherited blood disorder that leads to bone marrow failure. It prevents bone marrow from making enough new blood cells for the body to work normally and can also cause bone marrow to make many faulty blood cells. People who have FA have a greater risk than others for developing cancers and many who have FA eventually develop leukemia at a young age. Although FA is a blood disorder, it can also affect many of organs, tissues, and systems. Children who inherit FA are at higher risk of being born with birth defects.
Jiena was born with a somewhat duplicated thumb and has never been a good eater. She's always been below the 3rd percentile for weight and height and has declared herself a vegetarian tiger. She's outgoing, loving, and exceptionally compassionate. Her diagnosis came at the age of 5.
Mason was diagonosed with FA at 30 weeks in-utero. He was born with a shortened radius on his right arm, no thumb on his right hand, a barely-hanging-on thumb on his left hand, and an esophogeal atresia with a tracheo-esophogeal fistula. He also has a bicuspid aortic valve in his heart and a subglottic stenosis/webbing in his trachea.
This is our fight to live.