Continuing to Advocate

My sleeping beauty on KSNV's 5 pm newscast tonight - our local NBC Channel 3 station

We were given an opportunity a couple of days ago to share Hannah’s story with our local NBC news station and why it is so dang important that there is more research into rare diseases like Gaucher’s disease.   Even though I wasn’t in a good mental place to be interviewed, I knew it was important that I show the world why Hannah deserves to be fought for, every day and minute of her life.

The piece aired yesterday, Thanksgiving, on their 5 pm broadcast.  I will admit, I found it weird seeing myself as the news teaser earlier in the day.  We were sitting watching Judge Judy (knowing the news would be on soon), and there I popped up during the commercials.  Just a weird feeling.

It was a really good piece, I think.  Denise Rosch, the reporter, really hit on many of the key points we talked about.  They also interviewed Hannah’s Cerezyme nurse, whom we love, for the piece as well.  My only disappointment was that they didn’t mention the foundation that we are going to be starting up.   But overall, this was definitely a piece that showed why Hannah deserved to be fought for and why other children, like Hannah, deserve a fighting chance as well.

The news clip hasn’t been put on their website yet, but they do have us listed as one of their useful links.   Hopefully they will get it on today so we can post it.  Otherwise, we will just take a home video of the TV so we can share it with all of you.



  1. Can’t wait to see it! You are inspirational…continuing to advocate thru this difficult time. So proud to know you!!!

  2. Nana Waggs says:

    What a brave Mommy you are to be able to stand up and share the need for our children who are ill. You are doing so much, Carrie, and I’m certain you will be thanked over and over in the future by many as they see the benefits of your caring so much to reach out at this time in your life.

    May you have a blessed evening with your family.