Tuesday, April 30, 2013


We should know in about 3 months the results of Katie's DNA study.  It can go 3 ways: showing absolutely nothing, which would not be good.  Showing something that can be fixed, somewhat at least - which would be awesome!  Or showing some diagnosis that could mean she just stays the same or gets worse, or maybe a little bit better with therapies.  I think I'll be in tears in any case, hopefully good tears.

I guess it is what it is, and it will be good to know what it is, if possible. Katie is such a really good kid, I just hope that this hope I have is not going to be crushed to nothing.  I can't imagine hearing that this is how the rest of her life will be, never talking, walking unbalanced - she really is in there trying to get out, I know it!  I have a lot of hope, but I do have that hope in check.

I watch the videos of Shelby (see recent posts) and think that if it can happen to her, why not Katie?  I HAVE to be a little bit optimistic that Katie might also be one who can benefit from finding out the DNA results, I am her Mommy!

I believe we are all here on earth for some reason and I am hoping hers is to help science.  C'mon science, please be on our side!    

Monday, April 1, 2013

DNA Study

I've been busy.  I think I just aged 10 years in 4 months by having a big fundraiser at my house.  I'm still returning un-opened forks and Vodka, etc... so I don't know how much we raised yet, but it was fun!  Life should be back to normal in a few days.

Today we went to see Dr. Narayanan - he is the Dr. in charge of the DNA study that Katie is in.  I was thrilled to hear that we should hear back results within 3 months or so.  They had told us initially it could be up to 2 years so, whew! What great news! So for now, I am not going to pursue any other treatments.

Here is a video of Shelby, basically a miraculous recovery for her - she saw Dr Narayanan and was one of the first to have her DNA mapped at T-Gen.  I don't want to get my hopes up but maybe there is some chance of a recovery like this for Katie.  I am not counting it out, that's for sure. Shelby