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My 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.

Feed

Maly Lee posted a new journal entry.

Mason ate 10 small baby spoons of baby brown rice cereal for dinner! It probably only equaled out to one small teaspoon total, but I'm still so proud of my boy! I still ... Read more

Maly Lee posted a new journal entry.

Uh oh. Mr Mason is not feeling well... Hopefully he'll feel better once he's awake. I've been up since 4am suctioning him and giving him breathing treatments. His dad had ... Read more

Christine Ryan signed Mason's Guestbook.

Thinking of all of you and the Fourth of July I spent with your family two years ago! Wishing all of you a happy fourth and good health! Read more

Maly Lee posted a new journal entry.

Since Mason was about 5 months old, we were told that he had severe reflux (GERD). We couldn't teach him to eat, feed him a bottle, or even give him treats. He had to be ... Read more

Maly Lee posted a new journal entry, "Smiths Medical bone marrow drive".

We had a bone marrow drive today at Smiths Medical and I'm so happy because it went so well! The kids and I went to speak yesterday in front of a big crowd of the ... Read more

Maly Lee added a new photo.

Bonnie Ermilio signed Mason's Guestbook.

Maly, you are an incredible mom. I'm amazed at how you do so much for your children.  I'm sending LOTS of hugs and prayers for Mason to get through this problem.  He is ... Read more

Maly Lee posted a new journal entry, "24-hr PH Impedence Study".

We are 8 hours into Mason's 24-hour reflux diagnostic test and we're already so ready to be back home! A tube was inserted via Mason's nose and down into his esophagus ... Read more

Maly Lee posted a new journal entry.

We are on our way to the hospital for Mason's 24-hour reflux diagnostic test! Feeling hopeful in the hands of God! Read more

Bonnie Ermilio signed Mason's Guestbook.

Maly, OMG!  How scary! Thank heavens that no one was hurt! Thankfully, you didn't lose electricity.  I hope you'll all be okay with this horrible weather.Mason and Jiena ... Read more

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