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I know it's been a long time...I haven't updated Charlie's condition because as ridiculous as it sounds......I don;t want to jinx anything. One year ago today, Charlie was en
Charlie's life here on earth changes drastically each and every moment. One day he is spunky, playful, happy, full of energy and the next day he is unable to walk, suffering
On Monday Charlie will be back in Minnesota. He once again will be sedated in the OR and have biopsies and dressing removal for pictures. We have done this so many times now
I have just returned from my trip to Minnesota to speak at the "Wings of Hope" event to raise money for EB Research at the University of Minnesota. It was an incredible honor
I do not believe that a child should be thrown out from the school district in which they are open-enrolled in because they are fighting to live in a hospital a state away.
I am watching first hand the lesson of "compassion" which has been passed down to my children. I have always taught them to respect and embrace another's individuality. To t
I have written updates on Charlies condition over and over again. Each time deleting everything I have written. Where does inspiration come from to write something meaningfu
“Even though it is difficult to measure suffering
objectively, EB is one of the most tragic conditions I know.
We are at a critical juncture, where the cost of not moving
Each time I update Charlie's condition I am fully aware that his condition switches from one extreme to another. One week I am fearing for his life and the next week I am cel