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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

Upper Endo

It's that time again: upper endoscopy with dilation. This time, they are also taking a biopsy of his esophagus for research. Please keep this little guy in your prayers! His big smile is misleading. It's hiding a huge bundle of anxiety. He's already asked multiple times "Mommy, no owie?", which I can't answer without it possibly being untruthful.

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Comments

3 Comments

leona hensel
By leona hensel
Poor little sweetheart. At least they'll have him asleep for it but he'll still be uncomfortable after he wakes up. we'll be praying 🙏 for our little sweetheart that he doesn't have very much discomfort and we'll be praying 🙏 that he'll have good results from it. Praying that Jienna is doing quite well. We will also be 🙏 praying for you as well that God will help you know what to say to mason about his endoscopy with biopsy. We love ❤ you and we're praying 🙏 for all of you. Love ❤ your Bartlett UPC prayer 🙏 team.
Holly Hoxeng
By Holly
Little guy has had to deal with so much. Praying for an easy time for him and that the dilation works.
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anne murphy
By
prayers are coming his way and your way too. I hope that the procedure goes smoothly and without much pain to your sweet little boy.
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1 person hearted this