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Mason’s Story

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 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.

Latest Journal Update


I made Mason's feed blend this morning and on my quest for a jar to pour it in so it could be refrigerated, I pulled out a bottle that had been given to me while Mason was hospitalized last year battling an unknown virus wreaking havoc on his lungs and bone marrow and all those memories and feelings flashed back. 

The intensity of those feelings took me by surprise. So much darkness all around, but somewhere out there, you just knew there was a tiny sliver of light, and although you couldn't see it clearly, you kept trying to reach for it. Everyday there'd be a set back and the light would fade dimmer and dimmer, but you keep reaching and hoping it would shine brightly on you again. It took all of me to bring myself back to reality and remind myself that that was in the past and Mason is now with me and he is happy and healthy. I'd forgotten how draining his first 2.5 years were. But that was just the beginning. Mason and Jiena have FA. Until there is a cure, it may never let us rest.