Just updated the picture & added a bunch from our trip, be sure to check them out. Looking through them made me remember that I wanted to be sure to mention & thank publicly all the wonderful people we met. I'll start with our cabin steward Henry, aboard The Carnival Ecstacy & all the people in Camp Carnival that kept Julia safe while she played with her newfound friends, especially Rosie. Next I want to thank the all volunteer staff @ The Childrens Inn In Bethesda, MD who provided us with a safe homey place to stay while Julia underwent her procedures @ NIH. There where dinners for the families, Secret Santa shops for the children to buy presents for thier families & Mrs Claus even came & baked & decorated sugar cookies with the kids one night :) Next I'll move onto Nicole Yanjanin Dr. Porter & all thier staff @ NIH. We couldn't ask for more caring, wonderful people to shepard us through this crazy journey we find ourselves on. I've never had medical professionals care so much as to take so much time & make themselves so available to us.They spent hours with us talking about what we could expect & showed true concern for how our family is weathering this journey. To all those mentioned here & any I may have forgotten, Thank You, from the bottom of my heart.
Please feel free to check in as often as you like. I'm going to try to keep adding updates as often as I can or as they are relevant. Our main goal with this website is to bring awareness to Niemann Pick Disease and tell the story of our little girl. I truly believe God sent us an angel when he sent Julia to us :)
Email us @ Juliasjourney@outlook.com