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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

Happy July 4th!!!

Good morning Cowboy! It's another holiday. Last night Lenn and I were talking about how much fun we had the July 4th that Jenny and her family were here. All of you children were small. We made t shirts and got lots of fun toys. We went to River park in Weldon. We had lots of family good food and good music. You all danced and played so hard that you were exhausted by the time the fireworks show started. You never could tolerate those fireworks could you? That was the best 4th I can remember. I will treasure those family memories 4 ever!!!

I got a letter from Coach Jimbo Fisher. He's the football coach at Florida State. He wrote to me about Dylan Days and how we are bringing awareness to FA whIle also helping local families. It was a very heartfelt letter and I was very touched to receive It.

The 4th won't be the same without you but I know you will be right there beside us.

Special prayers for Shane and his family. I hope the doctors can find out what's going on with him and get him well and back to his family soon.

Keep everyone safe that's traveling this weekend.

Happy July 4th!!!

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

Love
Mama

Comments

1 Comment

Patricia Mcfarland
By Patricia
Happy 4th of July Dylan...love you..