This is the story of our son Parker. He is an amazing, smart, cheerful, strong and incredible boy. He loves outer space, the medical field, skiing, swimming, running, jumping, and more than anything his little sister, Addyson.
First I would like to say Parker (almost) NEVER complains about pain or discomfort. We know he has constant joint, foot, and hand pain but it's VERY rare he lets it slow him down. He's quite possibly one of the strongest people we know. Despite his condition he enjoys hiking, biking, running, being on swim team, ski racing, and everything that kids do. He's a trooper!
At the age of four Parker was diagnosed with a rare disease called T.R.A.P.S. (Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Syndrome). As of recent there are only a few hundred diagnosed cases in the world. Parker's admission to the PICU at St. Luke's hospital in February of 2009 with severe swelling, hives and a fever of 107.8 degrees is what prompted the genetic testing which uncovered the mutation known as TRAPS or r92q gene mutation. Looking back from that day it was much easier to see the pattern of doctors visits and trips to the emergency room which were all inconclusive to an illness but rather were all caused by his unknown disease. The symptoms of TRAPS are joint swelling, swelling in the hands and feet, headaches, fevers, abdominal pain, diarrhea, hives, mouth ulcers, and general discomfort and pain. Just since 2012 Parker has had severe headaches and inter-abdominal inflammation and is undergoing testing to see if these new problems are symptoms of his disease.
Since his diagnosis, we've had the great fortune of building relationships with some of the greatest doctors in Colorado, who in turn put us on the fast track to being accepted in a study at the National Institute of Health (NIH) where this gene mutation was discovered and is currently being studied. Parker has to visit a medical team in Bethesda, Maryland at the NIH every six months to further track his progress as well as get the most current treatments available however, since it is a genetic mutation a cure is not possible.
While visiting the NIH we have the privilege of staying at The Children's Inn (like a Ronald McDonald House). The Inn is a fantastic place where families from across America and from around the world come to stay while away from home during their medical treatment at the NIH. The Inn is a Non Profit, dedicated to making children and their families comfortable while visiting.