I had a fabulous time at the Immune Deficiency Foundation Conference in Disney World.  I know listening to lectures about IVIG crisis and Medicare reimbursement doesn’t sound like the thrill of a lifetime, but I was able to meet Dr. Orange and pick his brain about everything NEMO.  He is a brilliant man, but more importantly, he is a caring human being--dedicated to the research of NEMO and helping our boys every step of the way.  My thrill of a lifetime was meeting the Hagelin Family (Jack’s parents), the Merriman Family (Jackson’s parents), Linda Schatz (Jake’s mom) and the McHale Family (Robby's parents).  We laughed together, cried together, had serious talks, shared funny stories, showed pictures and thoroughly enjoyed each others company.  We mentioned how we wished we lived closer to one another.  We hope every NEMO family will be able to meet one day, with all kids in tow.  It was an amazing experience, and one that I had hoped for since Sam was diagnosed.

Please continue to pray with us, for each of our NEMO boys, with HOPE that every one will be cured and allowed a normal childhood.  We ask for continued protection from GVHD and from illnesses.  Thank you Father, for blessing us with new friendships.

"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty."

Psalm 91:1

We put together a video of Sam's Wish Trip--hope you enjoy it as much as we enjoyed our vacation!

http://www.onetruemedia.com/shared?p=8ef14cd540933ea75a4a27&skin_id=1702&utm_source=otm&utm_medium=text_url 
 

Much love,

Kelly