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

Saturday, March 8, 2008 9:00 AM EST

Well hello everyone!
Life sure can change in the blink of an eye! I have moved out of our house and living with my cousin for now. I is good to have company. It got pretty lonely there by my self. I have started a new job dispatching at a heating and air co. I like it so far. There are good people there that make it fun and the day pass by.

Robert is growing into a young man. He is taller than me and is so sweet. I still get wonderful complements on his manners and personailty. I have started to teach him how to drive my car. It is a stick and if he can learn how to drive that he can drive anything. That's how my dad taught me. He does really good and our second lesson is tomorrow. He is doing good in school still getting good grades. He has tested for High school next year and will be taking College Prep classes. He is so smart. Yes, I said High School. I can't believe my little boy is going to high school. I guess they do grow up fast.

PLease say a prayer for Aunt Rose. She has had some medical issues. I hope she can make a full recovery.

Not to much else going on.
Love to all,
Angie

Hospital Information:

Heaven

Links:

E-mail Author: Ahaynes199@aol.com

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