Monday, October 22, 2012

Mitochondrial Disease and death

Tonight I shed tears for another life lost to Mitochondrial Disease.  

This time is a little different than the other times that I hear of someone passing way too early because of this horrible disease.  I have shed tears before, yes.  So that is not different.  Usually, however, if I cry a little over a lost life from mito it's because I'm not in a great spot myself at the time.  I'm either having a bad day emotionally or physically already.  

When I hear of someone passing from mito it is through my network of mito family and friends that I have developed on facebook.  Up to this point I have not known the person who passed or any of their immediate family members.  I have only known of them, if that.  It is still difficult to hear, yes, but not like it is when you know that person (obviously).  This time I am facebook friends with her mother.  Her mother has, in fact, helped me many times with her kind words and her advice.  However, this is not the reason why it's different this time either.

The passing of this mito warrior has affected me more this time because Leslie was 24 years old.  She was married but did not have children.  It is so much more difficult to deal with her passing because she was an adult.  Children with Mitochondrial Disease are not expected to live long lives.  Every year they are with their parents is a blessing.  The parents of children with mito are told by all of their doctors that they will not live to see their 20's and usually they will not make it through puberty.  Some kids... a lot of kids.. will not even make it to age 10.  Everyone with mito knows that it's very often a fatal disease, especially in children and/or childhood onset.  However, it is not usually fatal in adults with mito and/or adult onset.  That is what makes this so heartbreaking and difficult to deal with.

I don't know if the people around me (i.e. my family and friends) realize that this disease can be fatal.  Everyone thinks that this is just something that has changed my life so that I cannot work and I have to use a wheelchair to get around much of the time.  This disease can change at a moments notice, or it can slowly change overtime.  Either way, it's not getting better and, for the most part, not remaining the same either.  I've seen the changes since I was diagnosed.  I am very thankful that they aren't those "at a moments notice" changes.  

Now, I am no where near as sick as many adults with Mito, but that does not mean I do not get scared.  Do I have the same fears of death as someone with cancer might?  No.  But that doesn't mean I don't have them.  I'm scared of leaving my kids and my husband mostly.  Any time I think about death I'm not scared for myself.  I'm scared for the people who love me.  I just do not want to do that to them.  This disease is hard enough on my kids to begin with.  I do not want my kids to have to grow up without a mom completely.  (I say completely because they've lost a good portion of their mom already.)

I do not know the circumstances surrounding her passing.  I do know that Leslie became sick at age 19 and has, therefore, only lived for 5 years afterwards.  My heart breaks for her husband, mom and everyone else in her family and they are in my thoughts this week as they deal with the pain of losing someone they love dearly.

Rest in peace, Leslie Williams.

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