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Dylan’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one.

My Story is the introduction to our CaringBridge site.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.



Hi there! My name is Dylan Cole Moore. I am 5 years old. I love cowboys, country music, cooking, and the Andy Griffith Show. I love my dog "Corky" and my pony "Silver" very much!

My blood is "sick". I suffer from a rare blood disorder called Fanconi Anemia. There are only 500 cases in America.

My Mom says that Fanconi Anemia is a very rare genetic disorder with a very high frequency of bone marrow failure and many other problems. Patients with FA have a 75% chance of developing solid tumors at unusually young ages, including head, neck, esophagus and squamous cell carcinomas, as well as liver tumors.

I was diagnosed on September 22, 2004. At that time, I was experiencing mild bone marrow failure. Over the last two years, I have been monitored very closely through routine bloodwork and regular bone marrow biopsies. My family has spent endless hours doing research on FA and consulting with doctors all over the world.

Over the last few months, my bone marrow failure has progressed to severe. This leaves me very vunerable to possible life threatening infections and internal hemmoraging.

I am going to get some "new" blood! I am facing a bone marrow transplant, probably within the next year. Doctors are trying to delay transplant as long as possible because of the danger associated with transplant. Bone marrow transplant for FA patients is the single most difficult and dangerous procedure in medical history. However, if transplant is delayed too long, the chance of a successful transplant is jeopardized. I could also develop leukemia, which reduces the survival rate drastically.

The past two years have been very difficult for us all! My family has gained a great deal of strength from, not only our friends and family, but our whole community. We have been truly overwhelmed by the outpouring of support. It has made this horrible burden a bit easier to bear!

My Mom says that you are all very special people! Please continue to pray for me and my family. Pray that:

God grants us the serenity to accept the things that we cannot change;

Courage to change the things we can;

and

Wisdom to know the difference.

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths. (Proverbs 3, 5-6)

Latest Journal Update

I'll Fly Away!!

Hey Cowboy,

Can't believe the day is here!!  Every time Lenn tells me I need to slow down and stop living life at a full gallop, I always say "I only have 18 years to cram as much living in as we can and then they will be gone!" Well that day is here!! We sure did cram a lot of living into those 18 years, but was it really enough?  Right now, it seems like the answer is no.  For the past two weeks, I have been thinking of all kinds of things that we should do before..... before he moves out and is on his own!!  WOW!!  Tomorrow he will be taking that giant step into the real world. I saw this today and read it over and over.http://betterafter50.com/2014/09/saying-goodbye-to-my-kids-is-not-nothing/   We have been preparing for this since he was born!! This is what we all want for our children.  It's just that when it finally gets here, we are not quite ready!!  I am so proud of the young man that Cody has become and I want him to go off to college and excel, but it is bittersweet!!   I am excited for him as he begins this new journey, but like the article says, it's hard to say goodbye.  Yes, they will still be home sometimes, but it's the always that I'm gonna miss.  Always seeing him in the hall as he turns away to avoid having to speak to me in front of his friends, always going to the games to support the team, always watching him carry the cross at church, always knowing that he's in bed before I can sleep, always being able to check on him and have him close by.  Sunday, he sang a solo at church.  He chose "I'll Fly Away".  How appropriate!  He will be flying away.  I want him to spread his wings and soar!

He will be auditioning for a Praise and Worship band at ECU!  He's really excited about that.  I hope he will be able to be a part of that.  I want him to continue to worship God while he is in college and he enjoys worshiping through his music.  He did a great job at Zach's service.  

In two minutes, it will be his move in day at ECU!  Please watch over him and keep him safe as he begins a new chapter in his life!

Night Cowboy!!  Love and miss you more than all the families that are sharing these mixed emotions tonight!!  A special prayer for the Rodwell family!!

Love,
Mama