Hi! I'm Caleb.
Watch me WALK! (click here) (http://www.youtube.com/watch?v=xZ-T6OCOWLE
My Old Web Page (click here) can still be viewed, but now it is only this site that is being updated. The old web page tells a lot of the story from my younger years. This page will keep you updated on the most recent happenings in my life!
I was born December 31, 2003. At first they thought I had mitochondrial disease, but now they know I don't. Instead, on one of my 5th chromosomes there is an 8 megabase deletion. (Researchers consider anything above a 5 to be big.) Within this deletion there are 16 known genes that are missing. There could be more, but at this point that is all they know. They are still unsure as to what role each of these 16 genes plays in the human body. There is no type of gene therapy or up-and-coming research that may help me because these genes were needed during development in the womb and when brain pathways were being designed and mapped out. My doctors, nurses and family will continue to treat the symptoms, but they will never be able to "fix" the root cause. (See Mom's Journal entry at my old page-- click here--for more details).
I'm tube-fed and I can't do much for myself, but through your love and prayers, I've learned to smile and react to my surroundings, and I love being entertained by my adoring siblings. I live at home in a cool "underwater" room, furnished by Make-A-wish, and I go out to school every day.
I have the best Mom and Dad in the world--Lucy, Levi and Heidi are pretty cool too! And there are so many people loving on me and praying for me; I am truly blessed. Thank you all for your love and prayers. Please keep praying, it works!
***HERE'S THE LINK TO MY OLD PAGE: http://www.caringbridge.org/pa/calebkrug