Monday, April 21, 2014

Finally Research In language I can understand.

Don't get me wrong. I'm no dummy....OK for the most part I'm not but do sometimes get tongue tied or freeze when telling people about Research and HOPE for Rett Syndrome.

Rett Syndrome is complicated and confusing. Even well versed parent like myself often don't get why one specialist says this and another says that... IE Neurodevelopmental and Neurodegenerative. I know it means stops growing and the other means deteriorates and dies so I  know which one I choose to believe. Abby's skills come and go and its just too bad there isn't a Neurouseitorloseit term. <
So, this weekend in my Facebook Newsfeed.... Yah I know I hate Facebook and am trying to get away from it but its where all my instantinfo Rett parents are...there was this AMAZING blog post in my news feed. It was from a Mom who's blog I have read over and over again but we are not Facebook friends or acquaintances or hey your kid has what my kid does lets be bff's or whatever you want to call it. You do learn over the years who knows their stuff and thank goodness this Mom does.

She explained what I haven't been able to because I just didn't get it. Sometimes anything above the stuff gone over in my home or in the ER I don't know or get every term, and I try not to until it applies to me because my brain is too full. I am getting too old, and frankly there isn't much space left.<<
I knew MECP2 was the gene on the X chromosome that made the protein that makes your Neurons fire and that gene doesn't turn on until you are 6-24 months of age. This is why our kiddos seem normal until Toddlerhood. I AM A PLETHORA of made up run on words today!

Elizabeth (Grace's Mom) put it perfectly in her blog this weekend and I wanted to share it with all of you.

You can find it and more on her website
Grace for Rett

and the post

...In Plain English...