Being Taught To Fly

Jack is a silly, snugly beautiful 4 year old boy with amazing dimples and a laugh that warms your heart.  He loves his sisters with every fiber of his being and loves to tell jokes like "Why did the soldier flush the toilet?  Because it was his duty!" He loves cars and planes and superheros. Little does he know that he is a real life superhero.  Inspiring those around him and amazing us everyday with his strength and courage. His newest feat?  He is about to teach his parents to fly.

You see, in three short years (the first year he was seemingly healthy) he has undergone xrays of his entire body, more bloodwork than we can count, months in the hospital, years of taking 10+ medications a day (anyone who has little ones knows this is not easy), a spinal tap, over 20 days of anesthesia, gi scopes, daily vomiting, been assaulted by daily seizures sometimes almost 100 a day, struggling with loss of cognition and motor skills, weekly therapy and the list goes on.  Most importantly, he has never had a single day that he has felt good, never a time where his belly didn't hurt and his legs weren't tired.  And yet he smiles and laughs and loves.  He is our hero.

The moment is here that we've waited 18 months for, our trip to the NIH.  For those of you that don't know, the NIH is the the leading medical research facility in the nation and the largest medical research facility in the world.  And they are interested in Jack, our little sweet, funny boy.  If we have any shot to help him, this is it... the best of the best.

The program that we are entering into is the Rare and Undiagnosed Disease Program which we applied to in July of 2013 and were finally accepted in May of 2014.  This program has access to information and research that is not available anywhere else in the world.  We are both hearbroken and excited to have this opportunity.  You see, admission is based strictly upon medical evidence and the evidence must support that your condition is rare (potentially never heard of) and that doctors cannot diagnose your condition.  Yearly, approximately 1,000 people IN THE WORLD apply and about 100 are selected, 40 of which are pediatric. 40 kids are selected a year and they chose us. It is a privilege to be accepted and it provides hope. We understand this may not result in a diagnosis today, tomorrow or maybe even ever.  But we are doing everything possible for our little guy and we will never give up on seeing those sweet dimples or hearing that giggle everyday  for the rest of our lives.