One year ago today our phone rang, it was Dr. Smith asking us to come into her office at Children’s Mercy Hospital in down town Kansas City, MO.  The odd part about the situation was we were a few weeks over due for a DNA test looking to find out what type of lysosomal storage disease Brisan may have because of the foamy macrophages they found on his tonsil’s and adenoids in May 2008.

Voicemail Brisan left me when he got home from surgery on May 27, 2008.

Chromosome 18, what is going on our friend? You and I along with everyone you ever met is affected! We couldn’t live without it.  So your telling me that a little tweak, something minor  could change the outcome in how our lives our affected by disease?  Yes sirree. We both have a defective model of one gene on Chromo18.

Chromosome 18

Here is a excerpt from http://ghr.nlm.nih.gov/chromosome=18:

Mike Is Looking For Employment

What can I really say? I am unemployed as of this week and that seriously endangers a lot of very important things to our family. I also wouldn’t imagine I would be writing about this situation pertaining to myself.

Currently there are several million people following in these shadows of unemployment. I recall thinking to myself before reality set in that I hope I don’t head down that road anytime soon!  HELLO!  I woke up on July 7th, headed into work and that reality took place finally that afternoon after we all attended a company meeting that six of us would be leaving the company officially on July 15th.

I remember telling Jennifer before our trip to Disney World (June 7, 2009) that I had a feeling this was a possibility even though the company was in good financial standings. It just seemed like you could smell it in the air. Some of you might not know what exactly I do but I am a business development professional for the online marketing and advertising world.  I had a peace about it all if it turned out to be my head on the chopping block because I know things will be OK.  Now I do not know what that “OK” looks like but I have faith it will be OK.  In our industry it comes down to technology. If technology hits a wall and isn’t working properly…it doesn’t matter what skills you have to drive in new business, your simply not delivering the agreed upon actions to make revenue. That’s the bottom line. The results as follows and you can not keep taking net losses.

This could be a blessing in disguise! What will be important during this process and outside of this situation is to allow God to do the driving of what direction he wants my career to take. We all sometimes try to take the steering wheel at times. OK, I can’t pull your chain here.  I am worried to a certain degree.  I just pinched myself because I just discovered for the millionth time that I am human! I feel there is so much to loose…house, insurance, and our basic livelihood.  Knowing that Brisan and Parker depend on our insurance to take care of their medical needs is certainly important but now the part will be how do we afford the Cobra payments? How do we pay the mortgage in the mean time?  We do know that a subsidy is available to make the Cobra payments look much better (not that they are cheap)!

Duncan, Parker, & Brisan

My attitude and outlook I believe are positive and I know that a bigger and better opportunity for my family is awaiting my skills that I have been blessed with.  A good friend of the Niemann-Pick family suggested that we put a list of needs on the front page of www.BriParDun.com.  She simply stated that in order for people to help they need to know what your exact needs our.  Me and Jennifer felt shied by the idea of it.  On the other hand it would be foolish of ourselves to think that we don’t need to ask for help.  I think asking for help when it is truly needed is very difficult because our society teaches that your a failure if you can’t do it on your own.

As Jennifer takes care of all the doctors visits and schedules of these events we have learned that Dr. Porter of the NIH would like to get Duncan’s DNA sequencing retested because he feels it wasn’t done properly to begin with last August/ September 08′. Then we are informed by Humuna that they do not want to pay for it because it has already been done.  Well duh! We could have guessed that!  I wonder how many millions of dollars in mistakes take place because of medical billing & coding errors?  What we have been told is they didn’t completely do the sequencing.  Duncan has his own issues and they are suspicious that he isn’t also affected with Niemann-Pick Type C.

Brisan Deep In Thought

We thank you for all your prayers. We thank you for any help you have given us in the past, present, and future. We feel that we are not able to give back sometimes but we really have been shown genuine love!  In the coming few weeks we will work on posting a list of our specific needs as a mutual friend in the NPC community has suggested on the front page of the boys’ website. If your able to help in anyway whether that be employment opportunities or simple things that could help us alleviate some stress for our family we would be beyond humbled for your actions.

Brisan and Parker Stults – What is NPC?