Sunday, August 4, 2013


Today we heard of an amazing breakthrough that gets us one step closer to a cure for EB. I hesitate to use the term "cure," as that word just seems too good to ever be true. Not that I'm trying to be negative, but it just seems all the treatments and options up to this point have had too many side effects or risks for Jonah, considering how "stable" he is at this point.

But still, THIS IS BIG. To read the article, click HERE.

In a (hugely over-simplified) nutshell, Dr. Tolar has taken Charlie's own malfunctioning cells and basically taught them to repair themselves. His cells, still in a lab, are now creating Collagen VII, when before they didn't. Essentially, Charlie can receive back his own corrected cells, eliminating the need for chemo and the risk of rejection, two of the biggest things that make the current bone marrow transplants so so risky. Charlie has RDEB, a different type than Jonah, but if this works, I'm certain they will expand it to Junctional kids and other types of EB. 

We are praying that this will be our cure. Will you pray with me? 

Photos of my sweet Jonah taken at bath time tonight. (And he is one of the "good" ones.)

In the morning, LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.  
- Psalm 5:3

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