Friday, June 1, 2012

There's No One Like Orion

Cool water and a Mom-shade on the last day of PIP, May 31, 2012. (Kendall School)
Orion has Orion Syndrome.  This is not an official syndrome, or at least not yet, or it'll be some other name.  There's no one like Orion, of course, and apparently no one has seen before the genetic/physical make-up like Orion's.

During my last visit (with Orion and Tasia on 5/29/12) at National Institutes of Health's National Eye Institute in Bethesda, MD, I received some fascinating information.  A couple genetic tests have come back with definitive results.  We're waiting for the rest of the family's blood to be drawn and checked to complete the genetic picture behind Orion.

Now, I am very curious, here.  Since it's said that Orion's the first of his kind, I want to be certain of that.  I'm wondering if there's a d/Deaf person out there, with amazing white hair at birth or at a young age, very poor vision and not an albino.  (Or if they've been mislabeled as albino...) If there is, has he/she been checked out for a certain gene?  I have seen such a man in a glance a long time ago but know none personally to inquire.

5 comments:

  1. We have a school in Ontario called "W Ross Macdonald School for the Blind" who we've swam against at provincal swimming tournaments. I remember seeing many with white hair, white lashes and they had their eyes open, it was very blue. I also remembered one guy (very hot!) with white hair and deeeeeeep brown eyes. Maybe you can contact the school? http://www.psbnet.ca/eng/schools/wross/index.html

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  2. Oooh, thanks so much for the tip!

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  3. I don't have any suggestions for you but I do agree! I think kids like my Thomas and your Orion are one of a kind.

    It's hard because the medical profession (genetics) tends to want to push kids into some box that already exists even if the child doesn't fit.

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  4. What about Clarissa baby on Facebook?

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  5. Hi Amy, this post was written over 3 years before Clarisa's birth. :) At the time of this old post, Orion was the ONLY one, now as of June 2015 he's 'become' the first one, Clarisa is unofficially the 2nd. Many thanks for reminding me of this post.

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