HilaryR
My blogs
| Gender | Female |
|---|---|
| Occupation | Mother, superhero-in-training |
| Location | Oklahoma City, Oklahoma, United States |
| Links | Wishlist |
| Introduction | I am Hilary, and Olivia is my darling daughter born June 13, 2009. She has a very rare form of epilepsy called Dravet Syndrome. It is caused by a genetic defect in the sodium channels of her brain cells (which is called an SCN1A mutation). The IDEA League offers a website full of information and support. Please check it out. http://dravet.org/ Another wonderful website and organization is the Dravet Syndrome Foundation. They are doing amazing work in the world of research. Please check them out and show your support!! http://www.dravetfoundation.org/. This blog is about our journey through life and our attempt to prepare for the future while embracing the joy of every moment we are given. Tho stumbling blocks will come, we will surmount them together. Olivia is, without a doubt, the most amazing person I have ever known. She inspires me to be a better person. I know this is only the beginning of her story…… |