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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


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!
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5 Comentarios

Bonnie Ermilio
By Bonnie Ermilio — last edited
Hi, Maly. I'm so happy you found the house you were looking for. That's so great!!

Please, Maly, give us your new address and e-mail. Holiday cards need to be changed with your new address. I tried to e-mail you but it didn't work.

How are Jiena and Mason? Are they better? How is Eddie?

I'm sending LOTS of hugs and prayers to Jiena and Mason. Don't forget to write your new address on Caring Bridge. I hope your children are getting what I've been sending them.

I'm praying that you'll heal quickly!!!

leona hensel
By leona hensel
Dear Maly, glad to hear you all got moved alright but so sorry to hear that Mason has been so sick. Praying 🙏 that they let him come back home 🏠 after his f/u appointment today . There's alot of that pneumonia and junk going around all over the place already this year. So sorry to hear that you had such a bad sprain on your ankle. You are right though, if we don't listen to that little small voice telling us to slow down, then He can sure have a more direct way of getting our attention ⚠ and slowing us down His way. Just sorry it had to be with a bad ankle sprain; however, on the bright did if things, at least it wasn't a break. I know how you feel on the crutches though, I was on crutches for two and a half years, then I was hit by a car as a pedestrian and ended up with hardware on my left side, they put a rod in my left arm from the shoulder down to the elbow and a forty-four centimeter screw in my left knee. In 98 I broke y left hip and they had to put a pin in my left hip and then in 2005, I broke my left tibia and they had to put a rod in my left leg from the knee to the ankle. They true to put me on crutches in the room the afternoon after surgery and it was a good thing there was a pt on each side of me or I would have been on my snoot because I was all off balance with all that metal on my left side. It looked hilarious. How's Jiena doing. Been thinking of her with her blood work since the last time they were monitoring her for the possibility of leukemia. Tell your sweet 🍬 hubby that we're thinking of him with everything and he'll get his reward for doing everything. We're praying 🙏 for all of you. Love ❤ and prayers always from your Illinois prayer 🙏 team. Take care sweetheart. We're praying 🙏 for you too.. Thanks for keeping us in the loop.
Angela Bedoya
By Angela Bedoya
Praying that Mason feels much better really soon and that your ankle heals quickly, Maly! And congrats on the new home! :)
I think we all occasionally ignore that small voice in our head from God. But thankfully He is always amazingly merciful to us. Love you guys!!! <3
1 person hearted this
Anne Green
By Anne and George Green
Maly and Eddie - what hard news about Maly's ankle but what joyous news about your new house. I tried to reach you by email but it came bouncing back to me so please send me an email to georgeanne1376@yahoo.com and I'll check in more with you in person. Also what is your new address and do you have land lines or just cells and are they the same or different. And I'm not playing Mother or God, but do pay attention to God's little quiet voice so he doesn't have to yell at you any more!!
Love to you all, prayers for Mason and his pneumonia, for Eddie and his loving care and patience for you all during this time and remember St. Mary's is still here and always will be and we are eager to hear
about all your changes, new schools for Jiena and Eddison?, and new friends on your new block.
Anne and George
PS - Aren't you thrilled ab out all the TV ads about "Be The Match?" All your hard work has made the program so very much more visible!!!
1 person hearted this
Natasha Kurtzon
By Natasha
CONGRATULATIONS on your new home. Hugs to you Maly for your injury and a speedy recovery for Mason. Hang in there Eddie!
1 person hearted this