It’s Not Fair: Living With a Child With Mito

It’s been quite a while since I wrote a post in the “It’s Not Fair” category, but I have had this particular post running around in my head for months now, and finally decided to put it on paper (well…on the screen…well, you know what I mean).

Those of you who know us know that we have a son who is currently four years old who has been diagnosed with mitochondrial disease (mito). A little definition is in order to help out those of you who have never heard of mito:

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

You can read more about mito here, and here. Karson’s mito affects his mind, and his muscles. Although Karson, aka “Mito Man,” is four, he is not verbal, and is not able to walk. He does make sounds, and has learned to say “eat” and “Da-Da” although it’s usually doubtful if he is using “Da-Da” appropriately because he will babble it. He is severely delayed cognitively and we have watched our third child progress rapidly beyond what Karson can do, and we’re expecting his youngest brother (who is now 5 months old) do the same. His muscles are similarly affected and he is delayed there as well. He is not able to walk, however he has made great improvement through the usage of his walker and has taken some steps using that. Although he can’t walk he is able to “army crawl” to make his way around the house, and he takes great joy in getting behind doors he’s not supposed to be behind, closing them, and then kicking the wall and laughing. (In some areas it seems as though he’s exactly as aggravating as a four year old is supposed to be!)

His long-term prognosis is unknown, because that is the frightening thing about mito. There is no way of knowing how it will affect him down the road. It could change and suddenly start affecting his heart, or lungs, or liver, or various other organs. What’s terrifying for us is that the mortality rate for those diagnosed with mito at a young age is startling high, I’ve read as high as 80% diagnosed before 5 do not make it to their 18th birthday. And you know what? That’s not fair. It’s not fair that I have to worry about my angel son getting sick and dying from this disease they know very little about, and can’t stop. Plain and simple- IT’S NOT FAIR!

But even that’s not the real topic of this post, because you know what’s really not fair? My son has mito, and certainly that’s pretty bad. But what is really unfair is that he is extremely healthy to have Mito. As I write this one of our friends with a girl with Mito is in the PICU. She’s been in and out of the hospital since before Christmas with various things going on. Another Mito friend of ours was finally able to go home this past week since being in the hospital since just after Thanksgiving. Both of these little girls are routinely sick, have a long list of medicines, and have more medical equipment at their houses than some Emergency Rooms. They’re fighting a constant battle dealing with the devastating effects of Mito, just to stay on top of the way it is affecting their babies. Their day to day needs is mind-boggling, just reading the updates about their babies is heartbreaking for me. That is what is not fair about my son having Mito. It is not fair that we have it so good. My son is healthy, is not on any medicines, and rarely requires a trip to the doctor.

While we had a tough time initially dealing with the concept of our son having this disease, and even that it was unfair for us, we quickly changed to thinking it was in fact unfair for us, because of the simple fact that we have it so good compared to many. Oftentimes it is easy to become so focused in on the problems we are facing, we fail to realize all of the other people surrounding us that are facing similar, often tougher battles. Our son having Mito is beyond my control, but what I can control is my attitude in dealing with it. The same is true for many of you- oftentimes life’s circumstances cannot be controlled, but what we can control is our response, and our attitude in dealing with it. The proper attitude changes your perspective on life…

What area of your life could use a better perspective?

Has there ever been a situation in your life that once you moved past focusing on yourself it changed your perspective?

Living for His Glory,


Kris

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