What my son has in common with Weakling Willie . . .

Before I discuss the title topic, I would like to mention if you choose to buy the book I am talking about which is "Weakling Willie", do not buy from Amazon. Sorry Amazon but your price is more than double from the publishing price. Follow the link to get it for $19.95:  http://www.publishamerica.net/product22366.html.

I am sure you are asking who is weakling Willie and why would he have something in common with my son. Especially since Willie is a Rhino Beetle. What my son and Willie have in common is they both were born with weak muscles. Although we did not know my son was born with a genetic fatal disease called Becker Muscular Dystrophy until he was diagnosed at 6 years of age.  We also did not know I was a carrier of this disease until I was tested after he was diagnosed. There is no history in my family before me.

I came across this book when I was researching  the web for some ideas of books I could read to my son's class. I  felt the need to educate my son's class since he has been bullied, teased, and bugged at school about why he could not run in PE. He told me they also called him slowpoke.  It was difficult for him since he just wants to be a "normal" kid.  He also said he gets tired of being asked questions about it. I know that it is harder for people to understand since if you would see my son, you would  think absolutely nothing was wrong with him.  But there is a difference. We are taking a more proactive approach to his care in that we are trying to preserve his muscles as long as we possibly can. Muscular Dystrophy is a progressive muscle wasting disease that will eventually rob my son and others like him of being able to walk and then take his life from heart and/or respiratory distress at a young age.  Duchenne Muscular Dystrophy is the worst form and kids stop walking by 12 usually. Jared has the next form of Muscular Dystrophy which could buy him more time since it is slower progressing but it is variable so we just don't know how fast or how slow it may be.  What is most noticeable is that he cannot run as fast, nor keep up with kids, that for walking, he must ride in a wheelchair or mobility scooter to keep his energy up and preserve what he can. If he overdoes, he ends up not being able to walk until he rests and recovers. But in overdoing, he loses precious muscle that can never be regained.  His body lacks the protein dystrophin needed to repair and rebuild muscle that we all take for granted. Jared's heart is already working too hard also and this is shown in an abnormal EKG, but the cardiologists explain it best by telling us it is an abnormal normal for a Muscular Dystrophy boy.  MD affects the lungs as well. I could go in to more detail but I might lose some of you as this is a lot of information all at once but perhaps I will continue this topic another time.

So, several weeks ago I read this book to my son's class comprised of a little over 30 fourth graders. They were quiet and attentive and very interested in Willie and how he would be able to survive in the rainforest with his weak muscles.  After I read the story, we were able to discuss what Muscular Dystrophy is and how it affects my son. We had ankle weights that we put on a few kids to demonstrate weak and tired legs and of course they all wanted a turn, but we only had so much time allowed to do this. So,we had some disappointed kids but it was quite an experience for me, the teacher and the students.  I very much enjoy being able to raise awareness for Muscular Dystrophy and advocating for my son. There is so much to be done in that regard and it is time we find a treatment and/or cure to put an end to this disease that disables boys and shortens their lives.

In other exciting news today, I found out a letter I wrote on behalf of the Muscular Dystrophy Association's Albertson's Shamrocks for Jerry's kids will be published in the Los Angeles Daily News in tomorrow's addition. I am honored and privileged to have a voice that can make a difference.

I hope to continue this discussion further in tomorrow's blog about the special talents of those affected by neuromuscular disease.  There are a lot of special boys and girls out there to showcase.

By the way, Willie shows what he can do even though he lacks strong muscles at the end of the book and wins everyone over. It is a happy ending.

Thank you to my first two followers Marcia and Tammy. You are awesome.  Thanks again Katie for encouraging me and reading my blog.

Goodnight and sweet dreams.

Kari