It's been awhile since I posted an update on the trial. Things have been going fairly good. Julia has slowly moved up in her dosages over the last 6 months. She is currently @ 900 mg a month. When she reached 600mg she had a small shift in her hearing that recovered slightly & again @ 900mg she had another shift & a small amount of recovery during the month following. Other than the hearing there has been really no changes either good or bad. We fly up again tomorrow for our March visit. I will try to do another update following this visit.
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