The Menkes Journey

 Menkes disease or syndrome is a disorder that affects copper levels in the body.  It reduces the enzymes that are necessary for bone, skin, hair, blood vessels, and the nervous system.  It is characterized by low muscle tone--which practically every part of our bodies are either a muscle or controlled by a muscle.  Menkes wasn't even a part of our family's vocabulary until March 2010 when our angelic little Cannon Rigby Copeland was born to Kent and Natalie.  Now, everyone in the family is learning more about this terrible disease--none more so than Kent and Natalie themselves. 

During our five days in Washington during the Christmas vacation, George and I more fully realized the devastating effects this disease can have on such innocent little children, how very difficult it is on the parents of a child with Menkes, and most importantly, how really precious these little children are to have been born into a body that they have so little control over. 

Cannon had a tube placed through his nose, down through his throat, and into his stomach when he was becoming so dehydrated because of being unable to swallow much anymore.  They put this tube in at the NIH in Maryland a couple of weeks ago, but it was only temporary.  So, off we went to Seattle Childrens' Hospital to have surgery for something more long lasting--a tube inserted directly into his stomach. 

As you can see, Menkes affects their respiratory system so badly, they seem continually congested and have trouble breathing.  The congestion is further complicated because they can't swallow.  This little child basically lives in a body where he can only move his head back and forth.  On the next blog, I will share the experiences we had with this little angel child in the Seattle Childrens' Hospital.