So it looks like I posted a day too soon. I recieved a call yesterday fom Nicole @ NIH to say that they are temperarily postponing our return. As things unfold with little Cassie Hempel the NIH is taking the oppurtunity to take astep back & consider all the information available to them to make sure they are doing everything possible to minimize the risk the surgery poses for our NPC children. I appreciate this about the team of doctors so very much, that they are not rushing recklessly through this trial but stopping every so often to make sure they are seeing all the pieces, so to speak. While I am slightly diappointed beacuse we were ready to go back, I know that they are absolutley acting in the best interests of Julia & every other patient involved in the trial.
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