The BIG news is.....Jack is going to be in the EPI 743 drug trial with Dr. Cohen at Akron Children's Hospital in Akron, Ohio!!!!
I haven't signed the papers yet but I have been emailing tirelessly to make connections and get medical records. It all started Friday when I listened to a teleconference with the doctors that are leading the EPI 743 research. The results they reported are amazing by Mito standards. The reports are of less vomitting, diarrhea, less seizure, less disease progression, improvement with muscle strength even disease reversal in some cases! This is BIG news in Mito world! It is really BIG! There's a catch though. In order to participate you have to be genetically dx with Leigh's and confirmed on MRI. Patients can't have kidney, liver issues either. You can't be on a vent either. This is a double blind study which means some will get the placebo. The study is set up 6 months on placebo and 6 months with EPI 743. While you are in the study patients can't take the "Mito cocktail". No one will know what which patients have what till the end. Also, at the end patients get to stay on EPI 743 if you want. Is that exciting or what!!!
and this is how God is taking care of Jack...
Texas Children's Houston/Baylor University/Dr. Scaglia is in the start/set up process to have the drug trial. It would be several months before Jack would be able to participate. I was making sure he would have a spot in the drug trial by getting his records in first, I thought! When I called Dr.K's office to have records sent to Baylor for the study they told me they had already sent them to Dr. Cohen in Akron, Ohio! I had no idea! They said they had tried to contact me. I think they must have had the wrong email. They already have things ready to go at that location and Dr. Cohen had reviewed Jack's file and wanted to see Jack's MRI. When I was making my own plans, He already had it worked out. God is in control and He is taking care of Jack!