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Make Sure Dylan Is Not Alone This Holiday Season

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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 Thanksgiving in Heaven Cowboy!

Mom and Dylan at the Fishing Hole in Mayberry
Mom and Dylan at the Fishing Hole in Mayberry
Hey Cowboy,

It's Thanksgiving again.  Again without you.  Guess what.  We used the fine china and those fancy glasses that you used to entertain Carepartners Deb and Sue in Minnesota. Just for you.  We talked about how much you enjoyed having them over to eat and spend time with.  We are so very fortunate that we made such great friends while we were there.  That is one positive thing that came out of that horrible experience.

Tonight I am so thankful for friends and family.  We are so blessed to have so many true friends and a great family!!  I am very thankful that we have a warm house to live in,  I am thankful for all of the animals that enrich our life. 

This Thanksgiving I ask for one more thing to be thankful for.  I ask that Skyler come through her surgery with no complications.  She's having it at King's Daughters Hospital.  Your old hospital.  I know they will take good care of her there.  I hope we get to see Dr. Owen and his staff.  We plan to get together with Dr. Sue too.  The Christmas season is here.  Went out shopping tonight for Christmas gifts.  I want my Christmas gift this year to be that Skyler comes home safe and sound and symptom free so that she can enjoy all of the things that she loves to do!!  I know that you will be watching over her!!!

Thanks for the rainbow this afternoon.  I know that was your message to wish us a Happy Thanksgiving.  I wish you and all of your cousins and loved ones that we miss so much a very Happy Thanksgiving in Heaven.  I also ask for special prayers for families that are missing loved ones tonight, that are suffering tonight, that are lonely tonight.

Night Cowboy!!!  Love and miss you more than all the turkey eaten today!!!

Love Mama





Comentarios

1 Comentario

Kimberly Laughrey
By Kimberly Laughrey
I was driving out to momma and daddy's this evening, just before sunset and saw the rainbow over Gaston, the double rainbow, immediately thought of Dylan and all of you. Be blessed.