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Here are beautiful pictures taken by photographer and EB Advocate Christi Zink. These were taken just this week at Ronald McDonald House in MN. We love Christi and all that
This post may drag on for a bit. It has been a while and so much has been on my mind....Charlie and I are in Minnesota this week. We had appointments all day Monday and tomo
First and foremost I need to let the world know about beautiful baby Quinn. Baby Quinn was born with Junctional Epidermolysis Bullosa. Babies with this form of disease have
I know it has been so long since I have updated. Days have come and gone by. I think about posting everyday but I honestly have had such a roller coaster of a month. Emotio
Tonight I did a google search of Seth. I found his memorial web page. Still can't believe I had to google him to even see this.....Please leave a message on Seth's memorial
I have not been able to share much of my experience about Seth until now. Because Seth belongs to the State of Washington there are confidentiality laws to protect him. I ca
Missing my little man. Two more days in Washington. Leaving is going to be so bitter/sweet.... Below is a link to the event that some of my best friends in the world are ho
Everyday a little boy caresses the Butterfly charm around my neck and asks me, "tell me the story of the butterfly?" Over and over I tell him about the "EB Butterfly."
Today we had our home study for Seth's adoption. In 3 days I leave for Washington....reality setting in. Last week Charlie got a low grade fever. Panic set in...Last night