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Mi historia

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.


Diario

Notificaciones

New Mason ER Update

5 hours ago

Well, things did not go as planned... Both good and bad.

The good:
The new GI team wants to evaluate Mason NOW while he's inpatient instead of waiting until the end of June with a bunch of different clinic visits! Plus, there are three of them at Amplatz and they each specialize in different areas of the GI tract as well as being well versed in FA so they're going to all join heads and help figure something out for us.

The bad:
The evaluation will take at least a few days so there's no discharge date in sight yet. What makes that "bad" is that Mason's big brother's 6th birthday party is this Saturday, which we've had to continually postpone already from the beginning of April due to other events that extended family felt "had to come first". We're still hopeful that he'll be miraculously evaluated and discharged in time for it, but it's still a bummer...



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Correo electrónico del autor

m.yalis86@gmail.com

Healthcare Facility

Children's Hospitals and Clinics of Minnesota

MN
United States