Cure 4 Jack

It is so nice to be home, now it's getting everything in order and really being home is the next step. Today we are cleaning up (spring cleaning that wasn't done), outside of what the cleaning service did. We've been having some cable probelms so Roy is up in that attic doing some re-wiring, Christina is out at a waterpark with our neighbor and Jack is just loving running around the house.

Just a reminder, if you missed the "Mystery Diagnosis" show on the Discovery Health Channel it will be airing again tomorrow (June 18th - Father's Day) at 6:00 pm.

Thanks to the airing of this show we have been contacted by 2 families, one in search of a diagnosis for their son and the other whose child has already been diagnosed with NEMO. We are hoping that more families reach out to us so we can point them in Dr. Orange's direction, since he is one of the leading NEMO specialist. Right now we are a small few group of families who have a loved one affected with NEMO and we are sure there are more out there who have either been misdiagnosed or haven't been diagnosed yet. One day the "Found NEMO-Finding Cure" Foundation will be a place for us to all go to for support. We are still waiting on our 501c3 which will make the foundation totally tax exempt. I am finding that this is my calling in life to be able to meet other families affected with NEMO or Primary Immune Deficiency and make a difference to children with these life threatening conditions.

Thank you "Mystery Diagnosis" for giving us the opportunity to share our quest to finding Jack's NEMO. And, Thanks to the National Foundation for Ectodermal Dysplasia "NFED" for getting out that the show was airing, hopefully there will be more who are affected with ED with Primary Immune Deficiency who will see it and make a difference to them.

Please continue to keep praying, now not only pray for us, our friends we have met along the way in BMT but also the families affected and not yet diagnosed with NEMO. To date, we know of, our Jack, Andy, Jackson, Simon, Jacob, Cooper and Keith with ED-ID (Ectodermal Dysplasia with Immune Deficiency). There are more out there who we have not had contact with and even more that have not been diagnosed.