So for the past few weeks we have been awaiting the FDA's decision on the clinical trial for cyclodextrin. The wonderful folks @ NIH have been in constant contact with them trying to work out all the details. They were finally given the green light today! The trial has been approved & Julia & I are scheduled to fly up to MD Jan 22nd for a 2 1/2 week stay. Julia will have surgery to install the Omaya resevior on the 28th & then recieve the first dose of medicine befire we return home. We are soooo excited to begin this I can't even begin to describe it. Keep the prayers coming because they have kept us going. That & the knowledge that God didn't bring us to this for nothing, he's been here every step of the way & he's teaching us through it to always rely on him :) Hope everyone has a great weekend!
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