AJ's Journey

Anthony James Haynes Born 10-22-2000 Passed On 10-5-2005

Welcome to AJ's story. At age 3 months AJ was diagnosed with Kostmann's Syndrome. This is a condition where AJ's bone marrow does not let his neutrophils (infection fighters) mature and enter into his white blood count. Therefore he has always had a ANC count of "0". Most of the DR's we have talked to say with the GCSF injection children with this condition live happy long lives. AJ is in percentage of people that don't respond to this shot. Therefore the DR's said he might not make it past 3 years old. Well with lots of antibotics and seldom taking him out in public we have made it to 4 1/2 years. We are here at DUKE to have a cord blood stem cell transplant. This is his only cure and with out it he will not be able to survive even with keeping him as a "bubble boy". We are greatfull for this chance and we know AJ is strong and can show how he can overcome anything he is faced with. We will be home before you know it.


Update: Sept 29 AJ was admitted to the PICU for lungs. He was put on the Oscillator at 4:00am and is now improved enough to be on the ventilltor. The Doctors told us at first that AJ would not make it off the machine. They are lowering his setting a little everyday. Please keep praying for AJ to return to 5200 soon. Update: AJ earned his angel wings on October 5 2005.

David and I want to Thank everyone for the support and love of family and friends and people we have never met before. We have felt so alone all these years now we feel like we are apart of a very large family!

Journal

Wednesday, October 5, 2011 6:13 PM CDT

AJ Haynes, never forgotten by those that knew and loved him. Still in our hearts and memories. Such a wonderful happy caring little person. Not only does my heart break because he is no longer on this earth with us but it breaks for these parents that have never fought the fight that some and most have lost to save our children. The ones that you hear about on the news and read about that hurt, kill, and disgard the children.

Most of you that will read this have suffered right along with me and are still fighting that fight. I sit here and all I can say that I have questioned every move every step every chocie I had to make for my son. But when it comes right down to it, I did the best and so have you. I again and will always say thank you to the people, friends, nurses, moms and dads I met along our journey.

Today makes six years since my darling AJ left this earth. I watched him last night spend his last Christmas with us. I laughed and cried at the fact that he was just awesome. If I had one wish (which I have thought about in detail) is that I could carry the hurt and pain for all of us. I would do that to give you all my dear friends peace. That song that before AJ I always broke down to is One More Day by Diamond Rio. But I know one more day would not be enough.
I miss you all and know that you are always in my thoughts. Our children brought us all together and made my 17 year old son Robert realize and grow up fast. He knows life is short and not always what you want but make the best of every day!!!

Miss and love you AJ.

Love to all,
Angie and Angel AJ

PS AJ,Bryan loves Shark tales too!!!

Hospital Information:

Heaven

Links:

E-mail Author: Ahaynes199@aol.com

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