Friday, June 3, 2011

Batten Disease Awareness Weekend

This weekend is Batten Disease Awareness Weekend. If you're new here, Batten Disease is what stole our precious daughter, Emma, from us way too soon. I miss her every day. My heart breaks just a little bit every time I look at her photos. I yearn to hold her, kiss her, stroke her hair, hear her voice. I yearn for things she never got to, go to the pre-K class at Wee School, ride a bike, go to homecoming, graduate.

Batten Disease is one of the thousands of rare diseases that don't get much attention or funding. Maybe if enough people learn about it, that will change. Could you please post something on your blog or Facebook page about Batten Disease this weekend? You can click here to read Jenni's post about their daughter, Celia, who also has Batten Disease. There are many organizations and businesses listed on her post trying to help raise awareness and money to go toward a cure or treatment for Batten Disease. Thanks for taking the time to read.

Thanks for loving our daughter. My prayer is that others like Emma will learn to ride a bike or go to the homecoming dance because when they are given the diagnosis of Batten Disease, the doctor will also give them the good news that there is a cure.

Please visit Batten Disease Support and  Research Association and Beyond Batten Disease Foundation for more information about Batten Disease and how you can help.

Thank you.


  1. Hugs to all of you this weekend...
    As hard as it may be to look at those photos of Emma, aren't you glad you have them? What a doll!

  2. I am so sorry! I just saw this today! I know it's not the weekend but tomorrow I will post about batten's for sure!
    Please let Marc and I know when there is anything you need us to help with. You know we are there!!!!! Love you guys and precious Emma....she was and still is such an angel!!!


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