Our Precious Cannon

Seventeen months ago, no one in the Copeland family had ever heard of Menkes--I highly doubt that 99 percent of the population ever has.  Basically, it is a rare x-linked recessive disorder which allows very little copper transport to take place in the body.  This decreased supply of copper can reduce the activity of numerous copper-containing enzymes that are necessary for the structure and function of bone, skin, hair, blood vessels, and the nervous system.  



Kent and Natalie were blessed with a beautiful little boy who they named Cannon.  He looked perfect in every way--he did have short brittle hair and baggy skin (both signs of Menkes),



but the doctors weren't worried at all and just explained these unusual characteristics away.  Most doctors have never seen a Menkes child, nor do they have any idea what Menkes is, either. 

At about six months, Kent and Natalie noticed that he wasn't meeting the milestones that most babies were doing at the time.  Again, the doctors just said some babies develop at different rates.  Kent and Natalie were not satisifed with the answers they were getting and basically starting doing their own research.  With just what they found on the internet, they requested a test for Menkes which can be a simple blood test, but it takes time for the results.  By the time they got the results back, he was nearly eight months old.  The diagnosis was conclusive--Menkes.  

   Tests, hospitalizations, taking him to the National Institute of Health in Bethesda, Maryland, to the most renowned doctor for help--everything showed that there just isn't much you can do except love them and make them comfortable. 




Formerly, he could suck on a binki, actually nurse from his mother, but when that became too difficult, he could only take a bottle.  Also, medications could be given to him by mouth.

He was actually trying solid food--not that he enjoyed it that much.



In addition, a physical therapist was coming to their home working with his muscles.  Since he could move his hands and legs a small amount, some things he enjoyed, some things not.

One of the hardest symptoms was his difficulty in breathing which has increasingly become more difficult.  He always sounds congested, and when he gets a cold, he just seems to pant and wheeze to get air.



Another symptom is that his little head can be sweating while his hands and feet feel cold. 



When Kent and Natalie took Cannon to the doctor at NIH in Maryland, he was way under weight.  It was becoming increasingly difficult for him to suck anything--no more binky and very little bottle.  After a thorough exam of his stomach, they were told he needed to be fed first through a nose tube, but when they got back home, he would need to go to Seattle to the Childrens' Hospital for a feeding tube directly into his stomach.





George and I went with Natalie and the kids to the Seattle Childrens' Hopital to have the surgery.





As we handed him over to the anesthesiologist and the nurse, we said, "Be so careful with our little bubba boy.  We love him so much!"  That was such a difficult task to have him sedated, then to have a major surgery.  We all spent some anxious time waiting for his surgery and recovery. 

When they brought him back to us, we saw, no more taped tube on his face, definitely able to get more nourishment, but never again to determine if he likes the taste of chocolate or of vanilla frosties better, never be able to crunch on a carrot stick or even suck on a popsicle.  All feeding would be liquid done through the tube in his stomach. 





Everything seemed to be working fine, but it was very difficult to keep this new feeding tube dry underneath with it being plastic and so close to his skin, as well as the fact that it is basically a hole into the stomach. 

One day, while I was there in February helping to take care of Kent with his torn Achilles, we noticed a small red circle around the feeding tube.  Within a couple of hours, it had spread further and he was in terrible pain.  We ended up taking him to the hospital where they put him on the most powerful antibiotics because the infection was spreading to his lymph nodes.  The doctor said he was one sick little baby.  But after three days, they were able to bring him home and just watch him closely. 



All medications have to be put through a line in his head because they can't get a vein in his arms or any other place.  Another characteristic of Menkes children:  twisted veins.  Whenever they gave him morphine, his head turned bright red.  We had to tell the nurses to put it in very slowly. 



It is so difficult to see the little one you love so much actually going backwards in ability.  Instead of watching them get better at hanging on to a toy or getting up on their knees to crawl, their muscles become weaker and weaker and they do less and less.  Kent and Natalie have gone through the heart-wrenching milestones backwards, and it is so painful.  However, they just keep carrying on.  Easy?  Definitely not!  But, when you love someone, you just do whatever it takes, and that's what their family has learned to do. 



About a month ago, they had to go back to Seattle and put in a new feeding tube which is much smaller and less likely for infection.  It isn't as hard to hold him with it.  I couldn't believe one night while we were still in Utah and it became clogged.  Natalie and Angie were trying to replace it with Kent on the line from Sunnyside telling them what to do.  I was so impressed!  They got the job done and we were able to feed him again.  Otherwise, they would have had to go to the Emergency Room to have them replace it.

Natalie's parents have absolutely been so wonderful to spend so much time in Kent and Natalie's home to help out. 



Little Cannon has basically 24-7 requirements.  So, George and I both agreed that I would spend a couple of weeks with them to help out and do what I could.   

Smiles are becoming more rare because he seems to be tuning out most everything around him.  They say his eyesight is probably like looking through the end of a pop bottle.  However, one day we went to lunch and Lauren was holding Cannon.  All of a sudden, he started looking at her and a small smile turned into a bigger smile. 

Suddenly, he was smiling the biggest we had seen in a long time.  It was so precious!

Hannah, Lauren, and Ella were so happy to see him smile.  It just warms your heart!

Ella is such a good big sister.  There is one game on Natalie's phone that is just sounds and little objects bouncing around.  He has always liked that and it still gets his attention most of the time.

Wherever Cannon goes, the feeding line and monitor go, too.  It keeps the milk feeding him at a constant rate.  Sometimes when you're holding him and decide to get up to go somewhere, you have to remember that you can only go a few feet.  I almost forgot sometimes!

Ethan plays with him to keep his arms and legs moving. 

Those kids really amazed me--they could sleep through him literally screaming at the top of his lungs or just went right on when he was crying during the day.  Never once did I hear them say for him to be quiet.  They are just so used to it and accepting of what he does. 

With such little movement that he makes, he has to be held most of the time.  He is getting so that he rarely sleeps, even at night.  I don't know how a little child can go on with such little sleep. 

He still sleeps in his little port-a-crib because he is only 17 pounds, but he is getting long, so they may have to get a new bed just for the length. 

Rides in the car include the feeding apparatus, too.  Natalie has figured out how to make it all work. 

He definitely knows and loves his brother and sister,

his dad,

and his mom. 

Our little gator.

I smiled when I was in his room.  There is a beautiful quilt that a mother of another Menkes child made for Cannon on his first birthday.  It is just so beautiful and such a thoughtful gift.

That blanket was right next to another blanket that meant so much--Kent's original baby blanket that I sewed and mended so many times.  That blanket was a very special blanket to Cannon's daddy!

Two other very special gifts Cannon received on his first birthday were a handmade book and his very first golf club. 

One of the dental partner's wife's made this book entirely out of fabric.  She had pictures transferred on the pages.  The first page had the song of "You Are My Sunshine . . . Please Don't Take My Sunshine Away," which was the theme of Cannon's first birthday.

Turning those pages brought tears to my eyes.  None of us ever knows the challenges that will come our way.  But with the Lord's help and those around who love you, you can make it through anything.  We are told that many times in the scriptures. 

This is a beautiful little family.  May they continue to be blessed that everything will work out for the best. 


One time Ethan told his mother that he wanted another baby--one that was perfect and could run and play with him.  His mother told him that's exactly what he has--a perfect little brother that Heavenly Father has sent here on earth--not in a perfect body, but one having a perfect spirit.  Even at his young age, he is beginning to understand that.

To all of those other little guys around the world with Menkes, or to those who may have Menkes in the future, we just pray that a cure may be found.  Although I was exhausted after those 17 days, I want to say, "Thank you, Kent and Natalie, for allowing me to understand a little more about a day in your lives and to be around our precious little Cannon for a couple of weeks."