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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 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.

Latest Journal Update

Happy 8th birthday to Jiena!

Today is Jiena's 8th birthday! In all honesty, when she and Mason were diagnosed three years ago (has it really been that long already???), I really could not see today happening. Anything beyond what we felt and where we were at that very moment was all I could see and feel. With FA, there is nothing. Nothing to tell you how it will progress, when it will cause bone marrow failure or cancer, what the prognosis is, or if a cure is even possible. For a long time, I saw no future. At least, none that would be worth living for. I did no planning. Planning, to me, was setting myself up for disappointment. Why plan when anything can happen at any given moment and then all those hopes and dreams would have been for nothing?! Then it slowly came to me. I'm still not completely there yet, but I'm slowly learning to accept that, even with a possibly bleak future (ok, a possibly very bleak future), Mason and Jiena are still here and they need me to be here with them too. I can't keep running away in my mind. So I can't plan a vacation for next summer because Mason could probably get very sick and we can't afford to throw away money, but you know what? I can still look forward to next year. We may not be able to go on a glamorous trip to Disney World like other kids (if we could afford it!), but we could always go to Duluth or Wisconsin Dells or even just to the Waterpark or Mall of America! Or we could just camp out in our living room all summer. Next year, we may not even get close to a family fun-filled summer, even tomorrow is not promised t anyone, but we do have right now and right now we have each other and we are together and we are happy. That's what matters. One day, I'll probably go back to planning because that's just me, I'm a planner, but for now, I'm happy with right now and tomorrow's looking pretty good too so next year might not be all that bad after all.

Jiena, I hope that, one day, when you read this, you'll understand why Mom was always so crazy and weird. It's because I love you, baby girl. You, your brothers, and your dad in all your own crazy glory. Nothing can stop me from loving you and nothing can stop me from making sure you are all happy. Happy 8th birthday! I hope you enjoyed your pasta party and "Frozen" cookie/cake!

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1 Comment

Angela Bedoya
By Angela Bedoya
Happy belated birthday, Jiena!

Love, prayers, and hugs,