Having your child diagnosed with a rare genetic disorder can be scary. It brings about the fear of the unknown as you wonder what to expect and how to care for your special child.
The good news is that you are not alone. We at Ring14USA are joined by a common denominator, and we are here to help you navigate through this crazy, joyful, scary, wonderful journey.
Whether you are a parent, caregiver, friend, relative, or just someone who would like to learn more, you have found the right place. Please register with our site and you will find an instant family, ready and willing to help in any way possible. Join us as we try to create a brighter future for our children and those to come.
As a resource, please read Debbie Gregoire’s “Health Guide for Parents.” We also have a very active group on facebook where parents can seek answers and receive support from other parents, www.facebook.com/groups/ring14 .
Do you know how beautiful you are? You are! You are! I see your tenderness, your unqualified love, your patience and dedication. I see your wounded pride, your doubt, anxiety, and rage. I see you adjusted to life as it is and tortured by impossible choices. I see you enlarged and compromised. I see all of you, and always, I see how beautiful you are.
By Barbara Gill, Changed by a Child
