“Our Life with Epilepsy” – Nathan Hello again, CCDS family, sorry it has been a while since I have contributed to the blog, but I am thankful to have the […]
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I felt a huge, monstrous, feeling of overwhelming and it never […]
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action Network (RAN) Ambassadors, Tamra and Jade. Together with representatives from […]
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas […]
“Making Friends” – Nancy When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether […]
“Obtain, Maintain, Sustain” – Regina Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot to learn. We had a lot to help him overcome. […]
“Realignment” – Nathan Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather. If you caught my last post, I discussed the expectations […]
“The Advocate, The Meanie, The Mom…” – Regina My oldest child, Chelsi, my first born, my 18th birthday present, and my graduation gift all bundled into my arms forever changed […]
“With a Little Help from My Friends” – Amy Before we found out about Ben’s Creatine Transporter Deficiency (CTD) diagnosis, he was diagnosed with infantile scoliosis due to his hypotonia […]
Our typical day and what our boys experience with CTD.