Julia finally recieved the medicine yesterday morning!!! Once it happened I got just a slight bit emotional realizing how long we have waited & prayed for this day. To think of all the people who have been working to make this trial a reality & all the time & money to get to this day. I know that gods fingerprints are all over this. Dr. Porter & his teams of people have been working on this for years, long before Julia was even diagnosed. For her to be the first patient in this trial has been an amazing experience. I want to say a huge thank you to everyone @ NIH & The Childrens Inn. They have taken such good care of Julia & me. We are now more than 24 hours out from when she 1st recieved the medicine & there have been no reactions or side affects to report, thank goodness. Just a few more days & we will be on our way back home :) Till next month.
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