Tuesday, July 26, 2011

Just let him be a kid!

The KDA Forum is a good resource for asking questions, expressing opinions, and finding answers.  This week a mother, who is a carrier, posted a question concerning her one year old son who might have the defective gene.

She wanted to know whether she should be taking her son to a doctor familiar with Kennedy’s Disease to make certain she is doing the right thing as a parent to ensure the best care for him as he grows up.

Well, if you know me, you know I have an opinion about most everything.  That doesn’t always mean I am right, but I will at least give you my thoughts. 

My response:

“If there is a benefit in having KD it is that onset will not begin until adulthood. It could even be late onset ... 40s, 50s or 60s. 

A genetics counselor can be helpful in answering your questions. Please, if you really feel the need to know, first discuss timing and needs with the counselor first.

For what it is worth, I believe you should wait. What difference will knowing have in how you raise your child? Testosterone is the enemy and it will be many years before that kicks into high gear. Once it has started flowing, it still will not make a difference unless ... again, unless ... there is a treatment or cure. 

Allow me to share a personal story. My son at the age of two was diagnosed with a malignant brain tumor. He had surgery to remove as much of the tumor as possible without causing further damage. He then had 33 massive cobalt treatments. As parents, we were crushed and all we could see was a child that had a huge horseshoe shaped incision on the side of his head and stitches that looked like Frankenstein's monster. Don't get me wrong, he was beautiful to us, but he had been through so much and we were so concerned that they did not get all the tumor.

When we visited the surgeon for a post-op follow-up (and by the way, we were fortunate to have one of the top ten brain surgeons at the time), I asked how we should treat our son. Should we put a football helmet on him in case he fell and hit his head? What happens if he raises up from the floor and smacks his head against the coffee table? We had a bunch of concerns (as most any parent would).

The surgeon smiled and said, "You will do your child a terrible injustice if you do not let him be a kid. He needs to run, fall, run some more, play, get hurt, and do all the other things a kid his age would do. Just let him be a kid!

let him be a kid

Our son was pronounced cancer free five years later. He is now 41. Some of the best memories were the times we let him be a kid.

I hope this story helps.” 

What are your thoughts?

There are a lot of parents who are reading this article.  It would be great if you would share your thoughts on this subject.  I am just one person and my wife will tell you that I am wrong more times than I am right.  Unfortunately, she is right once again.


  1. Your son had cancer? I didn't know that. Thank God he is healthy! That means there is a lot of things we need to learn about you, Uncle Bruce.

    I agree with your post - let your child be a kid! Why does she need to know NOW?

    Does that mean that if parents find out their kid has the gene this early, it can affect the way they raise their children?

  2. Lauren, thanks for commenting.

    Until there is a treatment or cure, there is nothing that anyone can do except hope and pray. Children do not exhibit any symptoms since it is an adult onset disorder.

    If the number of CAG Repeats are on the lower end, it is possible that onset could be quite late in life.


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