I just started a blog for myself. My son was diagnosed with ACC this week. I am struggling with sleeping and eating. I dont know what to do. We are waiting to hear from the doctor my son was assigned to at St. Jude, hopefully tomorrow. I would love to hear from anyone that knows about ACC or someone that wants to vent with me. We have a Caring Bridge site.
Thank you for listening.
Cheekylibrarian, here - if you have any words of support for this mom, her email address is on the caring bridge blog, or you can leave comments on the blogspot blog. Please let her know she isn't alone. If you happen to be someone that survived having ACC as a kid, or have been the caregiver for a young person with ACC, I know you have unique information that you can share with her. Sending you the best, Sara - you are not alone in this.
PS - (added 2/5/10) Jacob's aunt also has a blog, and posted it in the comments to this message - bringing it up to the front for you: