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Zachary

  • Zachary was 6 weeks old when we noticed streaks of blood in his diaper. We were told it was probably a food allergy. I went on a special diet since I was breast feeding, and we experimented with different formulas. At 9 months old he was diagnosed with ITP, a blood disorder that we were told would self-correct. He presented with excessive bruising, petechia, and eczema.  The sporadic blood in his diaper continued.
  • We spent 8 months getting regular IVIG, platelet and red cell transfusions along with other, more experimental treatments, however his symptoms persisted.  Several bone marrow aspirations showed small platelet cells but no leukemia. During this time Zach had several GI bleeds. His platelets would range between 5,000 and 30,000. Zachary’s eczema was always very manageable, but his bleeding was the main concern. He wore a helmet while learning to walk. We padded our hard furniture and back patio. Zachary’s illnesses, such as a common cold or ear infections, were difficult to get rid of as well. 

    We finally got the Wiskott-Aldrich diagnosis when Zachary was 1 ½ years old. He did not have a sibling, but we were lucky to find a perfect six out six match for a bone marrow transplant through the National Marrow Donor Program. Zachary received a successful bone marrow transplant in April of 2005 at Texas Children’s Hospital in Houston, Texas. He had a very good recovery with only a few setbacks due to infection post-transplant. Thankfully, he did not develop graft versus host post-transplant.   The journey was not easy, but it was one we were prepared to take.

    Zachary is now a healthy 8 year old boy. He leads a very normal life. He is down to one doctor’s appointment per year to monitor his progress. I always love to hear his platelet count. They can’t just say he is in the normal range. I make them tell me the actual number, out loud, so that we can celebrate.

    In 2010 we were able to locate his donor who resides across the world in Germany which was a huge blessing. We have been able to connect over the Internet and hope to one day meet.  If you would like more details about our journey, please contact me at jones.kathyg@gmail.com.

    Kathy






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