Prayers for Brenden

This is something no parent should have to write but more often than not a lot of parents find themselves in this position.  A position of worry,fear,helplessness,exhaustion and sadness for their child. I certainly never thought i would find myself in this position but here I am. My name is Chrissy Mingee and i am the mother of four beautiful children! The lights of my life! James is the oldest, then Kyleigh, then Brenden, then Gracie. Two boys and Two girls i am blessed beyond measure. Brenden my third child is something special (all of my children are!) but Brenden is unique in so many ways for a 6 year old. He shows kindness, empathy, and compassion well beyond his years. He is smart, outgoing, and always smiling..his laugh is contagious and he some how at only 6 years old always puts everyone else first.  That was up until 2 months ago..there was a change in Brenden. He is exhausted all the time,he kept getting infection after infection that no antibiotic could clear up,he stopped eating because it was to painful,he lost over 10 pounds in a month, and runs high fevers constantly. Then out of no where his under eye began to swell. The pediatrician just said it was a nasty sinus infection..but it kept happening and getting worse each time. Brenden started having trouble breathing and stayed congested, We tried inhalers, nebulizer treatments you name it. As i watched my son deteriorate before my eyes his doctor still insisted it was a sinus infection or bad chest cold. Then came the nights where he woke up screaming because his tummy hurt him so badly. I knew my son needed help and i just couldnt seem to get the doctors on board. Nothing was helping him...We finally met with a pulmonologist. Brenden was given a pulmonary funtion test twice..and failed both times horribly. The pulmonologist finally agreed that he needed to be admitted to the childrens hospital. This has been going on for 2 months and they finally admitted him yesterday on 6/22/2016. Brenden tested positive for a fungal and a bacterial infection. The inserted a PICC line and NG tube today 6/23/2016. He is currently on antibiotics and antifungals,oxygen, and getting chest PT around the clock. There are so many things we still dont know...what we do know is he has to have many tests and procedures done including, MRI's, CT scans,upper endoscopy,scope of his lungs,colonoscopy, and several biopsys. They are very concerened that this could be Cystic Fibrosis. He is currently in isolation to avoid him getting any sicker. He is on many IV medications,and is having bloodwork done constantly. My sweet kind hearted little boy is very sick and the doctors expect us to be in the hospital for 30 days pending the results of all of his tests. I am a stay at home mom of 4. I homeschool all of my children and my husband constantly works overtime to provide for his family but he will be missing many days of work for the forseable future with Brenden being so sick. The childrens hospital we are at CHKD is over an hour away from home. We are struggling to keep our heads above water right now and could really use all the help we can get.  All money raised will go towards, food,gas,house bills, and Brendens already mounting medical bills. And with 3 other kids at home things are going to get expensive very quickly. Anything at all is greatly appreciated and as we learn more about what is going on with our baby boy we will be sure to update. 

UPDATE:  We finally know what is wrong with our little boy, it is not cystic fibrosis but TRAPS disease. Traps is a very rare genetic condition that tends to run in famalies.
TRAPS stands for Tumor Necrosis Factor Receptor-Associated Periodic Syndrome. The description for TRAPS is as follows:
Tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS) is a condition characterized by recurrent episodes of fever. These fevers typically last about 3 weeks but can last from a few days to a few months. The frequency of the episodes varies greatly among affected individuals; fevers can occur anywhere between every 6 weeks to every few years. Some individuals can go many years without having a fever episode. Fever episodes usually occur spontaneously, but sometimes they can be brought on by a variety of triggers, such as minor injury, infection, stress, exercise, or hormonal changes.

During episodes of fever, people with TRAPS can have additional signs and symptoms. These include abdominal and muscle pain and a spreading skin rash, typically found on the limbs. Affected individuals may also experience puffiness or swelling in the skin around the eyes (periorbital edema); joint pain; and inflammation in various areas of the body including the eyes, heart muscle, certain joints, throat, or mucous membranes such as the moist lining of the mouth and digestive tract. Occasionally, people with TRAPS develop amyloidosis, an abnormal buildup of a protein called amyloid in the kidneys that can lead to kidney failure. It is estimated that 15 to 20 percent of people with TRAPS develop amyloidosis, typically in mid-adulthood.

The fever episodes characteristic of TRAPS can begin at any age, from infancy to late adulthood, but most people have their first episode in childhood.

TRAPS is extremly rare and flare ups can happen at anytime. When they do Brenden runs a high fever, gets extreme muscle and joint pain, inflammations of various areas of the body (including his eyes), extreme stomach pain, and fatigue. Some flare ups are minor while others require hispitilization. TRAPS also puts brenden at high risk for developing amyloidosis which causes kidney failure.

This is a life long disease, a life long struggle. Brenden has been started on weekly Enbrel shots along with many other treatments to help control his TRAPS. 
Since TRAPS runs in famalies all of my other 3 children along with myself and my husband will have to have genetic testing done.

We are so grateful for all the love and support that has been shown to Brenden and our whole family. We truly are grateful please continue to pray for us as we have a long hard road ahead of us.
 
With Love

Chrissy and Jimmy Mingee