Monday, February 21, 2011

“Our Story” was published!

It would appear that I am a published “author” now… in, I have written something that is in an actual BOOK. Crazy! I was contacted back in November to write about our journey in dealing with rare disease and having a child with Joubert Syndrome. I was told the story would be published as with a compilation of other rare disease stories, and this would be part of a promotion by Siren Interactive to help raise awareness for rare disease.

So, I wrote up our humble little story and sent it off to the editor and didn’t think much more about it. I honestly thought this would be some little pamphlet type thing, nothing major. I had kind of forgotten about it until last week. I received a box from FedEx that had 10 copies of these very official and real looking books in it. Little professionally printed and bound books!! I was astounded to see my name listed as an “author”!!!

In the “more information” section there is a website listed where you can find out more about the book….and the authors (I blush as I type that!). You can also actually buy this book on But I am proud of our little story. Check out the website when you get a chance. All the proceeds of the book will go towards the charities each of us authors have chosen….mine being the Joubert Syndrome and Related Disorders Foundation. I will try to post my (edited) story soon.

1 comment:

Mae said...

Words can't describe how proud I am of you. Through this most difficult time in your life, you have grown so strong. Instead of giving in to dispair when we received Haley's diagnosis, you became very proactive. Researched, learned & educated us, including her doctors, made sure she received all the therapies possible, continued to work & even started raising funds & awareness. You are an amazing woman, wife, Mom & daughter. I love you!