By Jocelyn Duff

img_0052While on vacation this summer a family from Washington reached out to us after seeing Dr. Jun Li at Vanderbilt University. We emailed back and forth several times before actually finding a time to talk—that three-hour time difference can make it tough to connect! But finally, on an unusually chilly night in August, while on the Vineyard, I sat outside and listened to Ethan’s story. We talked for over an hour.

I was shivering as I tried to answer all of Katie and Dan’s questions—I think more from the incredible realization that we were not alone. Here was a family with a child facing the same, horrific, rare disease as Talia. Here was another reason—another child, another family—that needed some hope for a cure.

To read Ethan’s story, as told by his Mom, Victoria, click here »