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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 Valentines Day Cowboy!!

Dylan and CarePartner Sue
Dylan and CarePartner Sue

Hey Cowboy,

It's Valentines Day.  Spent the day making Valentines goodies and cooking for some special people.  Wish you were here with us. You always enjoyed cooking with me, didn't you?  I miss the old days.  When you and Cody and Skyler were little and we all spent the day together.  Well, your Dad cooked steaks on the grill for everyone.  Yes, the grill just like yours.  We were talking about your grill the other day when Jennifer and Heather were here.  Heather entered as essay contest.  The winning essay gets $1000 donated to their favorite charity.  She chose Dylan Days as her fundraiser.  They came over to learn more about you.   It seems that they met you but they never did. But they have learned to love you through Dylan Days!!  

Michele Bullock recently lost her mother-in-law.  She told me that Ms. Hilda was unresponsive and one night she asked her if she could see her husband, angels, God?  She said there was still no response.  She asked her if she could see a rainbow and she raised her eyebrows.  She talked about something else and she didn't respond.  She mentioned the rainbow again and Ms. Hilda raised her eyebrows again.  She said she knew then that you were waiting for Ms. Hilda to give her a tour once she got to heaven. Once again, I am amazed at the influence you are still having here!! 

We were talking about CarePartners Deb and Sue over dinner.  They were two amazing women that walked into our life when we were in a strange city and knew no one. They became great friends and really really helped us through the whole ordeal. Then along came Juli and Steve.  They brought so much fun and laughter to our lives.   I don't know what we would have done without all of them.   

Guess what!  It's snowing outside.  The weather is going to be really bad this week.  Lots of cold, wind, and sleet and freezing rain!!  I pray that everyone will stay warm and safe!!  

Night Cowboy!!!   Love and miss you more than all of the candy given to sweethearts today!!

Happy Valentines Day!!!

Love, 
Mama