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CALEB BRIAN KRUG Caleb (shown with Mom) was born December 31, 2003. After an incorrect diagnosis of mitochondrial disease, a genomic microarray analysis last fall showed that Caleb has a significant gene deletion in Chromosome #5. Read about it below in Stephanie's own words. Previous entries are in Journal History.
See and hear Caleb enjoy the sparklers (Click Here) Caleb's Mom's Little Smiles Speech (Click Here) VISIT CALEB'S NEW WEB PAGE (Click Here)
Journal
Thursday, January 29, 2009 11:03 AM CST Oswald Chambers writes, "If God has made your cup sweet, drink it with grace; if He has made it bitter, drink it in communion with Him."
The news we have received over the past few months has been bitter sweet to say the least. In the last update (written at the end of October) I told you that Caleb had been in the Children's Hospital of Philadelphia for a few days. During that visit, blood was taken to do a new test called the Genomic Micro-Array Analysis. This test can identify every chromosome, but more importantly it can actually identify many genes on each chromosome. The results from this test have been filled with amazing amounts of information. In November, we learned that Caleb's test found a deletion that could potentially give us some more answers.
Now for those of you not interested in the scientific stuff, go ahead and menu-plan through this next paragraph! What they found was that on one of Caleb's 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. Of these 16 known genes, they are still unsure as to what role each of these genes plays in the human body. The next question asked is: then do the parents carry this same deletion? Both Brian and I had blood drawn and the results came back in early January to say that no, neither Brian nor I have this deletion.
What does this mean? Well, it's HUGE! First, Caleb is created exactly how God had intended him. (Just in case we ever doubted that!) The deletion occurred in the womb, before any of us would have known there was a deletion. Second, the root cause of Caleb's symptoms is not hereditary. Lucy and Heidi, genetically, have nothing to worry about. (Now, growing up with Brian and me as parents, this could cause some worry!!) Third, we will continue to treat the symptoms, but we will never be able to "fix" the root cause.
After meeting with the geneticist last week, we learned that there is no type of gene therapy or up-and-coming research that may help Caleb. Even if there were, geneticists believe that these genes were needed during his development in the womb and when his brain pathways were being designed and mapped out.
Where does this leave us now? Well, we are so blessed to have our 7-year-old Lucy reading books upon books, and thinking way beyond her years. We are so blessed to have moved forward in the process to adopt Levi when we did, for our sweet angel would never have been able to cross borders now. We are so blessed to have Heidi, a loving, enthusiastic and healthy little girl who meets much of life head-on...literally.
And our Caleb, well, he is now poised for a miracle...
Read Journal History
Links: http://www.singleexposure.com/ Caleb's Official Photographer http://www.springbrook-farm.org/ The Barn at Spring Brook Farm http://philly.littlesmiles.org/ Little Smiles Organization
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