Well our trip to St. Louis could not have been better. The highlight was meeting the two other NEMO families that I have been in contact with for over a year and a half and their families and being able to share stories and concerns and to lean on each other in some emotional moments. We all felt as if we had known each other all our lives and we miss them all already and are hoping to at least connect in person yearly. We were honored to meet Dr. Orange who has been pioneering the research and treatment of NEMO for the last almost 7 years now. He was even more wonderful in person than he had been on the phone or via e -mail contact. He and his wife are truly amazing people who allow a lot of time to be spent on our cause in hopes of someday preventing other families the pain and agony of emotional and physical hardship tying to help the boys affected by this disease. To date 56 cases have been reported worldwide. We found out Simon is the only one with this specific mutation. He falls on the genetic mapping chart at the end of the mapping and that puts him in a severe mutation category. His biggest demise would be micro bacterial infections which once his immune system starts to function should be a worry of the past for him. We all know the transplant will not fix the NEMO in his other organs, skin and so that will leave him with skin, teeth, and the lack of sweating as well as the eating issues which seem under control and we hope it stays that way, as major issues for him. Still in all, if we can conquer the non functioning immune system, the rest we can deal with.



Simon, the girls and Dave, myself and Daves mom all had a good time. We were able to go to a party for the kids and then attend a cocktail evening for ourselves and the IDF also threw a party at the zoo after hours for all the families. We were able to meet the woman whose son was the “boy in the plastic bubble” and hear her story to the point of shedding tears and realizing we are in a group of people who have put forth a lot of sacrifice to find cures to help others and make life better for the future. Immune deficiency disease is really a complex disease with a lot of unanswered questions and issues that all affected by it deal with without answers. So we were also able to tour the St. Louis Arch and hit Union Station with the kids (simon and I walked the park while everyone went us in the arch as I had done it a long time ago and wanted Daves mom to enjoy it). It was a good trip, all went well, we are all home and getting back into the routine and getting ready to celebrate the girls turning 5 this week with fireworks and princess dress up parties to get ready for. We forge on and continue to hope and pray to prevail. God Bless and our vntrs were 96% without b cells again so pray those cells surface next time as it makes me very nervous not to have them. We have to thank everyone who has helped us out in the last several months trying to make life easier for a confined family. Thank you all so much. Happy 4th . Love Tracy and David