Thursday, December 23, 2010


I wanted to write a separate little journal entry on our meeting with a woman named Brie. I had connected with Brie on a site called Marfan's connect. She lives in Seattle and was a first generation Marfan's kid just like Emri and was willing to meet with us! We met today after the appointments and had an AWESOME time getting to discuss so many things with her! We feel so blessed to have connected with her. She has VERY valuable experience to learn from and we hope that she can someday be a mentor for Emri when she is going through some of the same experiences. It was touching to see Brie and Emri together. We got to see their long beautiful fingers next to each other and Brie even took off her shoe to compare feet with Emri:) Brie is a strong, brave and wonderful person and we are SO glad we had the opportunity to speak with her. It was a wonderful time and we hope to do it again soon!!!  

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