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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


So much has happened in just the past month!

During my last post, Eddie and I were shopping for our forever home and we found it! We bought the house and moved in at the end of October. We absolutely love it living out here and the neighbors are all super nice and welcoming, but it sure is different going from urban living to becoming suburbanites! Having been a big city boy his entire life, Eddie still can't believe how quiet and dead it is here.

Unfortunately, Mason was starting to get very sick at the same time that we were moving. It's now three weeks later and he's still sick. Two days ago, Eddie took him to the dr and they were immediately very concerned that his chronic pneumonia flared up. He was very obviously in respiratory distress and they almost admitted him then and there, but we pleaded with them to give us more time to treat him at home with new medication. Today is Mason's follow-up so he and Eddie just left. I'm nervous and hopeful that he has made enough improvement with the new medications to avoid an admittance to the ICU. 

To make matters a little worse, I sprained my ankle very badly this past weekend. It's been hard for all of us since I do most of the stuff around the house. With Mason also being so sick, Eddie has had to take off every day of this week to help out since I can't be on my feet without crutches. It's been nice having him home, but it's been different with everyone relying on him and he not being used to it. I can tell that his patience is getting thinner as the days go on, but I still can't do much without a sharp pain in my inner and outer ankle so I'm only able to do as much as I can here and there to help him out. Clumsy me is finding it hard just balancing on these crutches too. My mom, who used to be a nurse, keeps reminding me that it'll take at least 2-3 weeks for my ankle to even accept weight on it again due to the severity of the sprain, but I'm hoping for some kind of miracle so I can be back on both feet again soon. Eddie thinks this was God's way of yelling at me to slow down because I was taking on too much and I think he is quite right. Around that time, I kept having this little voice telling me to slow down, but I refused to listen to it. Then suddenly, I sprained my ankle while blowing leaves outside. Sorry, God. I should've listened when you were still only whispering. Now I have no choice, but to slow down and Mason is NOT happy, but I guess I needed this.

Anyway, please keep us all in your prayers and I will try to update again as soon as I can!