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In Honor of Dylan

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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

Six Years

July 26, 2015

Hey Cowboy!  I can't believe it has been six years.  Six years since I heard you call "Mama".  Six years since you wrapped your arms around me and patted my back.  Six years since we "danced in the rain together".  So much has happened since you left.  I know you are right here with us, but it isn't the same.  I miss watching Barney and Andy with you.  I miss going to Pony Penning with you.  Chincoteague was your favorite place.  Remember the night that you auditioned right outside our door to play at that restaurant in Maryland?  Remember riding on the fire truck in front of the ponies?  Remember the ice cream parties here at the Seashell?  Tonight, we had an ice cream party in remembrance of you.  We had ice cream at the Island Creamery.  Your favorite place to get ice cream on the island.  Remember, every year we would have ice cream for dinner?  Only at Chincoteague.  The memories here sure are bittersweet.  Remember the door in our vacation home?  I will never forget the night that you slammed it so hard that it came off of the hinges!!  Remember the day you flung open the front door and shouted to the whole island, "LIFE IS GOOD!  LIFE IS GOOD!!" Dr. Owen had just called and said that your counts were high enough for you to go swimming for the first time in years!!

Cody will be moving to college in just over 3 weeks.  I can't believe that time has come.  Seems like just yesterday he was starting the Gingerbread House.  Now he is a grown man.  It is really hard to lose control.  Knowing that he will be living on his own and making his own decisions is pretty scary for a mom.  I know that we have raised him right, but you always wonder, "Did I do all of the right things?"  I am proud of the young man that Cody has become and I pray that he will have a great experience in college and have a wonderful experience there.  Since I can't be there, please watch over him and keep him safe!!

Love you to the moon and back!!  More than all of the many many people on this island.  

Love, MAMA