Interesting Developments…

Most folks who read my blog don’t realize that my son has a genetic disorder called “ocular albinism.”  What this means is his eyes don’t have a whole lot of myelin – and so the signals from his optic nerves aren’t processed as cleanly as a “normal” eye.  This trait is a lot like hemophilia in that it is passed on from daughter to son over generations.  My wife’s line has several people who were affected by the trait (including her father), and the disorder seems to be getting weaker with each generation that has it (my son has about the weakest form that a Caucasian male can have, African-American Males who have the trait tend to fare better).

I’ve never really seen myself as the father of a “special needs child,” but we are certainly making sure that the school is aware of his particular needs and that he will be given the tools he needs to learn well (I’m even contemplating looking up a combination smart-board/tablet set-up for him when he get’s to higher grades).  Other than that, my son’s pretty much like any other boy.  He loves physical play, star wars, and legos.  In a sense, he’s a chip off of the old block.

Still, as he gets older this is going to become more of an issue when it comes to driving (one of the few rights of passage we have left), sports (anything with a ball might be out of the question, which is a shame ’cause he’s got a great throwing arm, and good form to boot), and the general suckage of being “different” in middle and high school.  It’s because of that knowledge that when something like this comes up, and in our own back-yard, I get a bit excited.  For one specific condition, researches at U Penn (where our son has his doctor) have managed to successfully repair genes in the human eye – and seem to think that the younger a person is the more benefit they are likely to get from the treatment.

While the disorder being treated isn’t the one our son has, things like this give me hope that maybe our Son will get a treatment that repairs his eyes some time in his lifetime.  Though, the idea of gene therapy actually gives me the heebie-geebies.  I sometimes wrestle with the wisdom of genetic manipulation (just watch “I am Legend”).

5 Thoughts

  1. Wezlo,

    My thoughts go out to your son. As you know, and often mentioned in Quantum Physics, our thoughts are so powerful. They are not self contained but rather travel outward; and they are the building blocks of our reality:
    http://innerarchitect.wordpress.com/2008/04/29/the-power-of-your-mind-supporting-your-reality-one-thought-at-a-time/

    Here is hoping and holding the best thoughts for you and your family. My name is dean and I represent author and non denominational minister Susan Hanshaw.

    Her upcoming book “Inner Architect: How To Build The Life You Were Designed To Live” debuts in June. We would love your feedback!

    dean and susan

  2. I hear you loud and clear. I drove for eight years but flunked the eye exam when I was 24. My wife has been driving me around ever since (over 25 years). Inconvenient? Yes, but I manage by God’s grace to still pastor a church and I am a great spectator of sports (even tried my hand at fantasy sports occasionally).

    My particular condition is rod-cone dystrophy. Your son is fortunate to have someone fight so vigorously for him.

    Bless your family.

  3. just found your blog. my soon-to-be-9-year-old son has OA too, also loves legos and star wars. would love to learn more about your son! how old is he?

  4. Hey notsoccermom – suffice to say that my son and your son likely have much in common – a little younger though. (I try not to give out too much specific info about my kids on the net – so I’m not more specific!).

    Have you been to any OA conferences? We heard of one out in Texas that we might got to next year….

  5. we went to the NOAH conf in las vegas a couple of weeks ago. you can see my writeup on it on my blog if you’re so inclined. and no worries about the age thing; i completely understand. take care.

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