Cure 4 Jack

Incredible!!!! The first ever NEMO Deficiency symposium, included, The Hagelin Family, The Trevino Family and the Gutierrez Family. We set the stage for a beginning to a future of knowledge towards educating not only ourselves but to educate others for this immune deficiency that changed all our lives. We are so proud to be, as Andres Trevino wrote in Andy's Blog, "Pioneers"!!!!!! (please go to http://partnerpage.google.com/andy.org.mx to see first EVER pictures from the conference which reads "A Giant Leap for Mankind".)

We also had the pleasure of meeting Carol Ann Demerat, who's son David was born with the primary immune deficiency called SCIDS, you all know who is was, he was "The Boy in the Plastic Bubble". Carol Ann is truely an inspiration. David lived 12 years in a bubble that grew as he grew, he recieved a stem cell transplant, which unfortunately wasn't a success, and she never felt the touch of her son until right before he passed away and here she is 23 years later, giving talks about her life experience with David and educating people. She is where we want to be and we will be. Jack's life will be remembered just as David's is. Also, Carol Ann, having met us only for about 15 minutes the first day we got there, gave a speech Friday evening telling about David's story and preceeded it by dedicating it to Jack. We can't thank her enough for being so kind.

There are so many different types of Immune Deficiencies and still yet not enough information and education and research however, once diagnosed people affected can be treated with IVIG, which was Jack's saving grace after being diagnosed yet there are those who have difficulties with their insurance companies covering their means of living infection free. It is a shame how the systems work, but this organization helps make things happen. It helps with those needing assistance in finding doctors, medications and also people, Dr. Orange included, going down to Washington and lobbying to get these issues approved and covered. It was an amazing conference for the amount of knowledge the IDF is able to get out there to those in need.

Now, Dr. Orange........what can I say about him???? His NEMO symposium was great. As usual, I interuptted him with questions and probably drove him crazy, but just to be in one room with other NEMO families asking the questions we all have been wanting to ask and getting our answers and making a difference, was completely incredible. He is always ahead of the game and he began his talk with dedicating the first ever NEMO symposium with a picture of our Jack.

I so wish some of the other NEMO families would have been able to make the conference and I completely understand why some could not make it, but I am warning these families now, the next IDF Conference will be in 2 years in Disney World (Florida). Hopefully the boys having transplant by the end of this year will be out of the woods and we can be more then 3 famililes making the difference. I will keep all these families in my prayers for good, healthy, successful transplants to be able to board the "Pioneer Wagon". Please pray for all of us to be together.

Roy and I also had the pleasure of meeting Marcia Boyle who is the founder of the IDF and we sat with her for a few minutes and told her about Jack and she was very happy that we attended the conference and especially about NEMO. She didn't know about Jack and our expereiences and she has extended herself to us to be able to do whatever she can to help us get as much information as possible and be a part of making the difference. She said she was very estatic when Dr. Orange approached her to do a NEMO symposium and she wants us all to work together on continuing to do talks and getting NEMO out there and educating people. Jack's legacy begins, we want and will work on getting it out there.

The conference ended on Saturday and we said our good-byes to The Trevino's and the Gutierez families and told each other we would stay in touch much more then we have in the past. We are familiy, not tied by the bonds of blood, but tied by the bonds of NEMO and most of all, strength. We ended the conference at the St. Louis Zoo. The kids had a great time and we really enjoyed being together as a family. We miss you guys, already!!!!!! Hey, we just have more places in the United States to go visit and our door is always open here in New Jersey, stop in anytime your passing through!!!!!!!!

Here are some pictures we would love to share.