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


Mason had a bit of a hard time last night so I spent the night camped out next to his bed. His oxygen saturation was fine and his heart rate just a bit elevated, but not by a lot yet he still kept waking up upset and crying. At first I thought maybe he was having nightmares, but as the night progressed, I realized I could hear tiny gurgles from his mouth, which would wake him and then force him to readjust his position. To me, that sounded like reflux. He was probably crying all night because the reflux kept waking him up and we all know how annoying it is to be woken up every 15-20 minutes and how painful reflux can be as well. When I finally realized this at about 4am, I gave him a little bit more of his reflux med (the dose used to be higher, but was lowered about six months ago so I knew I wasn't overdosing him) and he finally slept soundly through the rest of the night. Thankfully, his nurses are back tonight so I'll relay this information over to them so we can see if it happens again overnight.