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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

Birthday Wishes

Hey Cowboy,

It’s been a while since I’ve written.  Sorry bout that.  Been really really busy with Dylan Days and helping Cody with is college applications. The fall roundup was this weekend, but Cody and I didn’t get to go.  He had his SAT test for college.

Dylan Days was a huge success!  The weather was beautiful, the trails gorgeous, the food was great, and most importantly, everyone was safe.   New friendships were made and old friendships were rekindled.

Things were really hectic and just as I was in a frenzy and said, “we are not doing this next year” as I always do when I have ten different people calling me from different directions, Jimmy Tickel stopped me in my tracks and told me to listen to something important he had to say.  My mind was racing about everything that I had to do but I told him he had my full attention.  As you know, he preached Cowboy Church for usthis year.  I expected him to be atop a mighty steed. As I climbed up on the bleachers, I saw, not Jimmy, but Seth on horseback!  You remember Seth don’t you?  I was a little confused but what I didn’t realize is that Seth is terrified of horses.  Jimmy told Seth on the way that we needed a cowboy for Cowboy church and that he needed to be that cowboy for us!  Seth was reluctant but Jimmy convinced him that we were counting on him because we couldn’t have cowboy church without a cowboy.  Seth took John Wayne’s advice.“Courage is being scared to death but saddling up anyway”!!  He climbed up on that horse just like the Duke would do it!!  Jimmy said that because of Dylan Days, his son, Seth, was able to conquer one of his greatest fears!!  Jimmy said that when Seth is older and comes to him about something he is afraid to do, he will remind him of the day that he faced his fears at Dylan Days.

 

Betty’s Bees quilting group made an absolutely fabulous quilt for us to raffle off at Dylan Days. It has a star stitch in it.  While they were working on it, Josh and Johnny’s kitten died.  As they buried it, Robbin told them that you needed a kitten to take care of in Heaven. Josh said that he wanted you to send him a sign that you got the kitten.  As Robbin was sitting outside talking to God that night, she saw a shooting star.  She told the boys and Josh got really excited and told her that the star was your sign that the star!!  Ironic that the quilting ladies had chosen the star stitch for your quilt.

 

We sold a lot of tickets for that quilt. When I placed the call to let the young lady know that she had won it, she said she had a story to tell me.  Quite intrigued, I made arrangements to meet her and she could share her story.  She told me that when she wrote her name on the ticket, she knew that she was going to win. I thought maybe it was just a hunch. But it was way more than a hunch! She said that she believes in connections.  Her son was diagnosed with a very rare autoimmune disease and has been requiring treatments for the last several months.  She said that the fact that she won the “Cowboy Up” quilt was a sign from you that everything is going to be ok.  His next treatment was today! I was dumbfounded!

 

I am just so amazed that you are STILL making a difference in people’s lives!!

 

Thanks for the rainbows that y’all sent me from Heaven for my birthday.  Saw one on the way to work and Mrs. Dorothy sent me this picture of one she saw!! She said to tell you hello!!

 

Everyone always asks, “What do you want for your birthday?”  Well, if I could have three birthday wishes, I would wish for my family to all be healthy and happy, for Kendall to be healed, and for one more day with you.

 

Night Cowboy.  Love and miss you more than all the stars in the sky, the grains of sand on the beach at Chincoteague, and all of the drops of water in the Atlantic Ocean.  Tell Michele's Mom Happy Birthday!!  Give her a hug from Michele.

 

Love,

Mama

 

 

One More Day

 

Last night Ihad a crazy dream
A wish was granted just for me
It could be for anything
I didn't ask for money
Or a mansion in Malibu
I simply wished for one more day with you!

One more day, one more time
One more sunset, maybe I'd be satisfied
But then again, I know what it would do
Leave me wishing still for one more day with you
One more day

First thing I'd do is pray for time to crawl
I'd unplug the telephone and keep the t.v off
I'd hold you every second 
Say a million I love you's
That's what I'd do with one more day with you

One more day, one more time
One more sunset maybe I'd be satisfied
But then again I know what it would do
Leave me wishing still for one more day with you

One more day, one more time 
One more sunset maybe I'd be satisfied
But then again I know what it would do
Leave me wishing still for one more day
Leave me wishing still for one more day
Leave me wishing still for one more day with you.