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Thursday, January 24, 2008

Genetically Speaking II


How many times can I show a picture of me talking to a class? I decided to change things up and have the genetic counseling students I spoke to today surround me in the above photo. I don't know if you noticed that they're all of the female persuasion. I did, though I didn't happen to get any phone numbers!

Still, they were nice enough to listen to me for an ENTIRE HOUR. Prior to my appearance, the students learned about Duchenne's from one of the doctors at The Children's Hospital of Philadelphia. My job was to share the more personal side of the disease. I used a PowerPoint presentation containing photographs at various points in my life.

But as this was a class on genetic counseling, I also shared my thoughts about genetic testing and pregnancy termination. I took some heat from a few readers for my comments on this to last year's class. I told the students that I would personally not want to bring a child into this world knowing he would have DMD. That doesn't mean I'm rejecting my life or the lives other guys with the disease. There was no genetic testing when many of us came along. Once you're here, I believe you must live your life to the fullest. But nobody wants to have Duchenne's. I would not knowingly want to subject my child to it.

That's just my opinion, though I would think there are others out there who feel the same way. So criticize me if you will, but please respect my opinion as I'll respect yours.

4 comments:

dad said...

i agree with your assessment of not wanting to bring a son into this world with dmd. however, there is more hope today that a cure is on the horizon. nevertheless, i wouldn't trade you for any other "healthy" son....except maybe bill gates!

Amy said...

As a sibling watching a brother deal with DMD over his life, I can agree with you that I would not knowingly bring a child with DMD into the world. As a school counselor who works with many "typically" developing students, I see how difficult growing up can be without a disability. As a potential future parent, I would want to offer a child the best chance at health and happiness that I knowingly could.

Lori said...

Thank you once again, Josh, for getting out there and educating people! I really appreciate you educating genetic counselors. You cannot begin to imagine the multitude of people you are helping by speaking like this. As a sibling of someone who had DMD, I was very frustrated by a couple of genetic counselors who told me that my brother did not have DMD because 1) he was so well educated and held a steady job; and 2) he was in his late twenties when I started the process. It is very frustrating when you know more about the disease than the people whom you expect to provide professional advice! Thanks to you, all of the students you spoke with will have a thorough knowledge of DMD.

To echo your dad, I agree with what you're saying, but would never ever have traded my wonderful, fabulous brother for a so-called "healthy" one. In a lot of ways, he was healthier than most people!

Thanks again, Josh. You are so inspiring. If everyone tried to help others as much as you do, it would be a much better world.

Kimi said...

I fully respect your views on this subject Josh, and I truly am on the fence when it comes to this topic. First off, no one knowingly brings a child in the world w/DMD, its the luck of the draw. Maybe I'm taking your stance too objectively when it's more a generalization.

Looking at the situation from a genetic standpoint, a women who is a carrier has a 25% chance of having a child w/DMD and a 50% chance of having a son w/DMD. So IMO no one "knowingly" brings a child into the world w/this devastating disease. But if the circumstances were different and you were married, would you want kids? I ask b/c (assuming your wife is not a carrier) you would have a 50% chance of bringing another carrier into the world and a 100% chance of having a daughter who is a carrier. Maybe you are thinking but my daughters aren't affected physically (although now there is a theory on manifesting carriers http://www.mda.org/publications/Quest/q56girlsdmd.html), but you will knowingly be putting your daughter in this exact predicament we are now debating, and as a parent I would think you'd want to save your daughter from that pain and heartache of making a difficult decision like this.

But all genetics aside, I'm assuming you mean you are in favor of a carrier aborting her fetus if she has a son w/DMD, and as a person w/a progressive disease I can understand why. I would hate thinking I am knowingly subjecting (I like that your final sentence used this word rather than bring) my child to a life with a progressive disease. I would also take a "normal" life in a heartbeat.

When I was younger I shared your exact opinion w/no hesitation, but now that I've actually entertained the thought and had a desire to have children, I'm not so sure. Eric and I made the practical decision that we were not destined to have children, although there was a strong desire. But if I do accidentally get pregnant one day, I'm not sure I could abort my child, regardless of the situation. I've come to the conclusion that for me, I can't fully make an informed decision until I'm physically and emotionally subjected to the situation.