Interesting, Very Interesting

Taking a break from the party pictures to post about some EDS related news.

My Aunt Lynn and Uncle LaVerne brought this article with them from Iowa.
This was on the front page of the local newspaper in the small town of Ottumwa Iowa. My mom and her entire family is all from the Ottumwa area. And for those that don't know, I was born in Oskaloosa which is the next town over.

I was amazed to read that a doctor in such a small community would catch a case of Ehlers Danlos. The article is focused on type 1 (possibly type 3). They make a very small reference to type 4 (Scott's type) which is typical for EDS news. Type 4 affects such a small percentage of EDS patients that while it's the only fatal type, it ends up being the least talked about.

I wanted to share it with all of you because it gave me hope. Hope that if a small community like Ottumwa can identify EDS (in any form) than maybe awareness is really getting out there. Maybe there is a chance for finding a cure some day.

Then I start to think about if we (Scott and I) already found the "cure". We can't fix Scott's disease but we were the first in the US and possibly the world to do PGD for EDS type 4. We took a small family of four that had three people afflicted with the disease and stopped it in it's tracks. Never to be seen or heard from again in the Witt family. We kicked EDS's ass.

While, I've never thought about it as the "cure" before, maybe that's just what it is. I've watched enough bad movies, Armageddon comes to mind - Bruce Willis at the end, to know that sometimes in battle you have to lose a few soldiers to save the world.
I HATE that Mom Witt, Tamara and, in all reality, Scott have to be the soldiers to fight the war but without them we couldn't have saved Kate and all of Kate's kids and grandkids and great grandkids.

After dinner tonight we were discussing the timeline of events in Scott's diagnosis with Kris (imported for the party from CA). It hit me that maybe there is a reason, a big picture kind of reason, for Scott having his clinical EDS diagnosis and second aneurysm just three short months into our relationship (one Christmas Eve - the boy has a flair for the dramatic).
Had Scott's EDS waited longer to show itself maybe we would have had children already. Maybe that child, those children, would have EDS too.

Maybe this all happened for a reason.

The idea of Scott no longer being here is something that I can't imagine, I've talked about it before. Maybe I need to adjust my way of thinking. Maybe I need to stop thinking of Scott as a victim but as the conqueror that he truly is.

I can't quite wrap my brain around all of this tonight. This has turned into a much different post than I had written in my head
So for tonight, I will leave it at this....

Raising awareness for all types of EDS will do amazing things. And maybe some of the best awareness has been raised by my husband.

Thank you husband, in your own weird, shit-tastic kind of way, you saved our daughter. This beautiful, sleepy, book obsessed little ball of sweetness is safe because of you.

Anonymous –   – (June 3, 2010 at 8:27 PM)  

facinating :)

Anonymous –   – (June 3, 2010 at 11:49 PM)  

Scott is truly a warrior.Hopefully people will become aware of this not so obscure disease.Kate looks like a little angel when shes sleeping.There is nothing sweeter than a sleeping child.Well maybe a sleeping mouse haha.Nancy

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