Update on Boys Diagnosis

It has been one wild ride lately in our house with the boys.  It all started almost 2 years ago when we were asked to be part of a research group for autism after both boys were diagnosed.  I thought why not, I am willing to help in any way we can.  So they came to our house and did blood work as part of the research.  They told us if we didn't hear anything back in 6 months that everything was "ok".  Fast forward 18 months.  I am doing my usual afternoon drive from school to school to get the boys and my phone rings.  I pick it up and it is them telling me that our test results from our bloodwork showed that the boys had Fragile X Syndrome and that I was a carrier.  Wow!  OK, now what?  So the next few days I researched online like a crazy fool barely taking time to shower, called all our family, called every one of our local doctors, and then called KU Med where we have been going since Tyson's original diagnosis.  We have found that in Manhattan we are about the only ones with this diagnosis so none of them really know much about it.  We are now in contact with KU Med and are hopefully getting into a brand new clinic starting for kids with Fragile X Syndrome.  It will be opening in the next few months.  The research shows that this is the one known genetic cause for autism.  So one positive in all of this is that we are one of the few who know the cause of our boys' autism.

So here I am a few months into this new diagnosis trying to figure it all out.  Our goal is to raise awareness about Fragile X and are hopeful that with awareness and research there can be some huge advances for our boys.  There is a lot of really good information out there and it looks like some medicine trials are getting closer to finding a pill that would maybe help.  The best website I have found is www.fragilex.org.  And on Facebook I found Kansas Fragile X Links Group that has had a lot of links to good research articles too.   

And here are a couple really promising research articles.

http://www.autismsupportnetwork.com/news/could-autism-be-reversed-pill-3789343


http://www.boston.com/business/healthcare/articles/2010/08/23/cambridges_seaside_has_new_approach_to_fragile_x/?page=1

We are trying to come up with new ideas to raise money for Fragile X research this year instead so I will keep you posted!