Introduction: Get to Know the Author



Welcome to our blog, To the Edge and Back: A Family’s Journey Through Rare Disease. My hope in starting this blog is to reach those who may be going through something hard in their lives and give them hope of better days ahead and ways to find joy in their journey.

We have been in the world of Rare Disease for 2 years and I have been pretty open about our struggles and successes on my daughter’s Facebook page @oursweetsagemarie but decided to make a more accessible place so that our experiences may reach a new and broader audience.

 

I am Catherine, mom to two beautiful and unique girls: Clover and Sage. I am the wife of a very hard-working man, Brandon. Brandon and I have been married for almost 9 years. After moving from Utah to a small town in Idaho, Clover was born and is now 4.5 years old. Clover is a spunky, talkative, kind and smart girl who has a unique love of life that is contagious. Two years later, Sage, our sweet "Forever Baby" was born.  When Sage was just four months old, she was diagnosed with Epilepsy and progressively PVNH, Infantile Spasms, Aicardi Syndrome, Cerebral Palsy, and Lennox-Gastaut Syndrome, and thus our journey began. These diagnoses created a drastic life-changing time for our entire family and propelled us onto a path we could have never expected. 

In this blog I intend to address each part of our journey in dedicated posts to give as much detail as I can and give justice to how our journey began and all the impacts it has since had in our lives. There will be discussion about Seizures, Medications, Doctors, Specialties, Hospitals, Therapies, Developmental Delays, Multiple Rare Disorders, Financial Aspects of caring for a medially complex child, and Resources to help those with Disabilities. 

This is going to be a very intimate and personal blog for our whole family, and I ask that you be respectful of our experiences. If you have any questions about Sage’s diagnosis or want to show your support, please feel free to reach out to me and I can help direct you to resources and fund raising for awareness. This is something I have wanted to start for a while now, and with the two-year anniversary coming up, I feel that there is no time better time to start than now.






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