Jamie's Journey

Jamie's Journey Jamie is a clever, cheeky, and charming 6yr old who loves books, dinosaurs, animals, but most of all laughter. At Jamie’s 7 month appointment he was also dx with Allergies to wheat, dairy, soy, peanuts, and eggs. The rash on his legs which he had from birth now covered most of his body. His skin would crack around his face and fingers but he was slowly gaining weight. By the time he was 18 months old he was allergic to over 20 foods including beef, citrus, beans, peppers, tree nuts, pork, corn, and lentils. On April 1st 2015, Jamie had his first anaphylactic reaction. It was just like any other day. Jamie and his cousin, whom I watched, were eating their lunch, everything he had was on his safe list. All of a sudden Jamie started scratching his face intensely, I grabbed his mittens, socks we put on his hands to keep him from tearing open his skin. I called my husband and let him know that I thought Jamie was having a reaction and I might need to use the Epi-pen. When I gave him the Benadryl his face was starting to swell and his cry was becoming horse indicating that his throat was closing. Shaking from fear I used his Epi-pen and called 911, dispatch stayed on the line in case I needed to do CPR. During our 24hr stay I had several Drs and nurses tell me I had saved his life. Knowing your child is on death's doorstep is the worst feeling I have ever experienced. Over the next year we had to use the Epi-pen several more times, welcomed baby brother, and regained eggs. It seemed like Jamie caught every bug that passed by. Every time he would get sick it would take weeks for him to get better where others were over it in just a few days. We were referred to an ENT and he had his tonsils and adenoids removed. After his surgery we noticed that he had a massive boost in learning and improved behavior. We were so excited that he was improving; however after three weeks his behaviors and impulsiveness returned. A few months later he was put on a steroid medication for a respiratory infection, again we saw the same boost in behavior and learning followed by the drop-off 3 weeks later. The pattern became more evident over the next year when Jamie was Dx with Asthma and went on the steroid medication more frequently. The next 3 years were a whirlwind of Drs appointments, ER visits, and therapy evaluations. He's seen neurologists, neuropsychologists, developmental specialists, allergists, immunologists, geneticists, and endocrinologists asking each one why he had this bizarre reaction to steroid medications. No one could answer. When Jamie was 4 he was with dx hypothyroidism and Autism. We started looking into a service dog after he climbed out his locked window at night, dropped down 6ft and crossed a fairly busy street. However we put things on hold while we tried to identify all of Jamie’s conditions. Some of the conditions suspected were degenerative and we wanted to make sure that if he had a service dog it was trained appropriately. When Jamie was 5 he was dx with Pierpont syndrome however Jamie’s variant is, as of right now, only Jamie’s he is truly unique, a unicorn among zebras.  In just this past year Jamie was dx with Growth Hormone deficiency and ACTH deficiency. He gets a shot every night to replace the growth hormone he doesn't make and steroids twice daily to replace the cortisol. We also have to monitor him closely and watch for signs that he might be going into adrenal crisis and needs additional steroids. Symptoms include confusion and brain fog (ah ha!), vomiting, and passing out. He also has to carry an injection kit in case he has a significant injury, like a broken bone, or if he is unable to swallow his oral medication. If he doesn't get the needed steroids he could go into shock and die. We finally had the answer to why he behaved so differently while taking steroids. Although it is scary, as long as he is able to get his medication he will live a long happy life. We finally feel we have Jamie's puzzle put together. When I began my research again I came across Novacek's 84 Labradoodle and reached out. Jamie's dog will be trained to detect when Jamie’s cortisol levels are low and help us make sure he is getting enough replacement steroids to keep up with his rapid growth and avoid hospitalizations due to adrenal crisis. His service dog will also be trained to help with his sensory issues, help him stay calm, deter him from running off, and find him if he does. In short, a service dog will save Jamie’s life. With all of Jamie's medical issues we have not been able to save enough to get this process started. We have put down the deposit for his puppy which will be born any day now but will need funds for the remainder and to fly down to Texas to pick it up. We are hoping to raise $4000 to cover those costs.  Thank you for your support. Please share even if you can't donate. $5 goes a long way when we all work together.