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Well Maddie is now 13 months old!! We celebrated her first birthday at Chuck E Cheese on July 28th. Although she didnt get to go near the rides/games, she still had a blast. Maddie's current diagnosis is still DBA (Diamond Blackfan Anemia) a bone marrow failure disease, however, they are still trying to make an accurate diagnosis. Maddie doesnt produce any red blood cells and she has a chronic low white blood count and neutraphil count. They did do a steroid therapy on her for approx 7 months and she was nonresponsive so she is still blood transfusion dependent. She has several other problems as well. She is immunosuppressed so Maddie recieves IVIG every 3-4 weeks.She is still on a special formula as her body has a hard time breaking down the food to digest it. We are currently working with her on swallowing issues. She is still on stage 2 baby foods but with therapies hopefully she will overcome this obsticle very soon :) She is still in and out of the hospital with infections and illnesses as she catches everything due to her immune difficiancy. They are now testing Maddie for an extremely rare immunological disease known as CGD. It is so rare that they have attempted 3 lab draws now and have all failed because of either improper packaging or wrong tube/vile. We are going in on Monday for her 4th blood draw. She has several different doctors appts per week every week. It has been such a long road already and so much more is ahead she will most likely need a BMT (Bone Marrow Transplant) in the near future. This has been so hard on my sister Aimee (Maddies mom & dad) Darrell and they also have 3 other children 8 year old twins Tyler (boy) & Taylor (girl) and a 2 year old Logan (boy), So they are the reason I have set up this site for Maddie so we can get people all over the world to be praying for our little Maddie and also to put an awareness out there for these rare childhood diseases and also to encourage everyone who is able to donate blood you could be saving a little babies life just like Maddie.