Walker's Medical Fund

Hey my name is Katie Clouse and I am raising money for an amazing 7 year old boy named Walker. Walker spends more of his life at the doctor than not,  so lets raise money to help his family.  Here is Walker's story...
One day around the age of 2 years old Walker woke up and he was screaming in pain and running a temperature of 105, doctors were dumbfounded. Every 4-6 weeks Walker had "episodes" starting with high fevers 104-107, next comes his rash which is like a sunburn that migrates all over his body, then extreme pain in all his major and minor joint and then he gets sick to his stomach, and stops taking anything by mouth. At first they thought he had Crohn's disease and through several endoscopes and colonoscopies all they saw was minor inflammation. The doctors again were confused. Over the course of a year his disease evolved. It turned into something from nightmares. On top of his regular symptoms, he started getting large sores in his mouth, tachycardia, conjunctivitis, swollen lymph nodes, many broken bones from minor accidents, heart and lung inflammation, and mysterious anaphylaxis allergic reactions. His primary and Gastrointologist referred him to an Infectious Disease Doctor. After multiple hospital stays we finally got insurance to approve genetic testing for a Periodic Fever Syndrome, and it was positive for TRAPS, which explained a few of his symptoms and then it showed something else, an unknown mutation that hasn't been associated with auto-inflammatory diseases before. We tried several biologic medicines, Enbrel, Anakinra, and Illarius, all of which caused even more sever reactions and even though they lessened the pain in his joints, they caused his episodes to come more frequently and With more force each time. Walker has been in the hospital 50+ times in 5 years. Sometimes he is discharged from one hospital to be admitted to another in a different part of the state. He sees his primary Doctor, a GI doc, infectious diseases, immunology, allergy, cardiology, rheumatology, surgery, orthopedic, and then has three therapist, physical, occupational and aquatic. Every single day of his life is a fight and struggle. He has has multiple surgeries including 5 endoscopes, 4 colonoscopies, 2 exploratory laparotomies, appendectomy, lymph node removal and a surgery to correct the closing of his urethra. As of August our team of doctors feel like they have exhausted all their resources and feel it's time to call in the big guns in Maryland who specialize in Auto-inflammatory diseases. Walker has multiple diagnoses excluding TRAPS, UNSAID (unspecified autoinflammatory disease), Failure to Thrive because for some unknown reason his body doesn't absorb the nutrition he needs from food and he's only in the 40% of his age group at 47lbs, Junior Rheumatoid Arthritis, Chronic Pain disorder, and he's Immune Compromised. We hope in getting accepted to the nation institute of health in Maryland that they will have a new drug trial to help slow the progression of the primary UNSAID. We hope they can do more genome research and find out exactly what this gene is attacking and how to help him. Each day he has enough narcotic pain meds to knock out a grown man, but they help him function most of the time. Once Walker gets to the point of not eating or drinking usually only IV fluids and a NG tube into his stomach to pump medicines in help. He gets blood work done monthly because as of this summer his liver enzymes went through the roof and caused liver damage, which they are unsure if it was from the latest biologic or long term use of meds or the disease itself. Even though every day is a battle, every day is a miracle. He wants so badly to be a healthy little boy. He loves cars, Legos, super heroes, and the beach. And for the last year he has been a high school football coach, standing along side "his team" the Greenville Red Raiders which is the highlight of his week, every week. He loves his siblings and his dog Beau, who will one day be his therapy dog, going to the hospital and school with him. Last year Walker begged to attend school, so through tears and anxiety we had his medical mask made and he went. He was only able to attend about 80 days total but he was so happy to be there. This year is much the same, he goes when he is able and tries his hardest to stay as long as possible, even if that means sitting in pain and fighting back tears. We travel to MUSC 8-12 months of the year to see a group of Rheumatology specialist, GI and Nutritionist. His head doctor is one of the leading doctors in his field and still sees Walker as medical conundrum.

Everyone he meets falls in love with him, he's just one of those kids that draws you to him. His smile and laugh are contagious and we often find the doctors and nurses hanging out in the hospital rooms with him just to be around him.