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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

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Hey Cowboy,


I know that Cody is a grown man now, but that still doesn't keep me from worrying about him. The seniors leave on their trip at 3:45 in the morning!!! They are flying to Florida for Grad Bash at Universal Studios and will visit Disney and Wet n Wild!!! It will be a weekend packed with fun and I know they will make wonderful memories. I just pray that everyone will be safe!!! You keep an eye on them.


Remember when we went to Disney? Everyone said you were too young to enjoy it. I'm soo glad I didn't listen. We still talk about how mad you got at me because I wouldn't let you drive that blue racecar!!! You failed to tell everyone that your feet didn't reach the pedal though didn't you? I wish I could go back to that time.


Next week Cody will be serving as a Page at the NC House of Representatives. It will be a great experience for him. We went shopping to get him a suit to wear and he walked in and said, "I need a set of threads!!" It's amazing how we see or hear things that make us think of you almost daily!!!


Special prayers for Haley and her family. She was in a very bad car accident this morning and was airlifted to Greenville. She had to have surgery.


Love and miss you to the moon and back!!


Love,

Mama