Chapter 2
In retrospect, I should have seen something coming. She would get sick often and would stay sick for longer than anyone I knew. Even a cold put her out of commission for days on end. Trips to the doctors office became the norm. It seems as if every time things were looking alright, she would crash. And crash hard.
By the time she finally slowed down on the school work, her body started to give up. Everyday she would be mentally and physically exhausted and constantly ran a fever. As the days passed, getting out of bed and even walking became difficult for her. I still remember a difficult decision fell upon us one day in March 2009 when we drove to the store and had to buy a wheelchair. At first it was only intended for extended shopping and grocery store trips but as I watched her struggle more and more to walk even the short distance from one end of the house to the other, I realized that wheelchair was going to receive more use than we thought.
The part that killed me the most was watching the internal struggle she faced as her strong will fought her ever weakening body. No one wants to admit defeat when dealing with their own body or mind, especially when no one can tell specifically what is causing this downward spiral. Why would a previously healthy, active, young woman be suffering like this?
We sat face to face with a number of doctors, listening to each and every theory of what they believed was wrong and were ultimately left feeling more hopeless as each test came back normal. By early spring, I had watched my wife undergo a spinal tap, cat scan, MRI, x-rays, sonograms and enough lab testing to last a lifetime.
…And this was just the beginning.
-Philip
Hope for the Weary 
I have a child that does almost like you and all her tests are normal but shes so sick she cant even go what were you diagnosed with??? it seems to be a mystery but i watch her daily getting sicker and sicker…..
I’m so sorry to hear about your child. Comments such as this let’s me know that I need to finish this story for others out there going through similar situations. I was diagnosed with hypogammaglobulinemia. It is a type of primary immune disorder that must be treated with ivIg infusions every 4 weeks. Once I had the right doctor, it was not hard to diagnose. But, as you know, finding that one doctor can sometimes take a while. I encourage you to keep going and keep trying. Each time you find the “wrong” doctor the temptation seeps up to never go to another. Also, it helped me to get into a larger teaching hospital. I don’t beleive I would have been diagnosed if I hadn’t gone to one. They are more current on research and rare disorders.