×

CaringBridge Needs Your Help

Honor Dylan with a Tribute donation to CaringBridge and you'll help even more people surround each other with love and support when it's needed most.

Donate Now

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

Pilgrimidge

Hey Cowboy,

It's quiet in the house.  Too quiet.  Cody and Skyler have gone to Pilgrimidge this weekend.  When I dropped them off on Friday, I had to think of you.  This year, you would have been old enough to go.  You would really have enjoyed it!!  But after I thought about it, I realized that you are enjoying it, because you are right there with them.  

Went to see Pa Pa tonight.  He's in the hospital.  I hate hospitals.  I know that they are a necessary place when someone is sick.  I just hate them cause they bring back so many memories.  Looks like we will be spending some time at Children's Hospital of the Kings Daughters in Norfolk.  That really brings back some memories.  I remember when we decided that it would be your local hospital.  Dr. Owen was great.  Even though I always walked in with a knot in my stomach, we always made some good memories while we were there too.  Of course, my favorite one....the $5,000,000 paycheck from Dr. Owen.   Skyler will be having surgery there on Dec 2nd.  Dreading it, but will be glad when it's over.  

Praying that Pa Pa gets good test results tomorrow.  

Night Cowboy!!  Love and miss you to infinity and beyond!!

Love,
Mama