06May 2024
“Does It Get Easier” —Chelsi
Does living with CTD ever get any easier? When the burst of behaviors starts and you feel like you lost control how do you handle it? When your stresses are elevated what do you do?
Continue reading
25Feb 2024
Notes from the 2023 Virtual Conference, General Sessions –Kim
In 2022, I visited a full CCDS symposium for the first time. With both my background in neuroscience and my little brother being a CTD patient, I wrote a guide that explained all aspects of CTD in such a way that families without medical or scientific backgrounds could follow. Continue reading
01Feb 2024
“How Gio’s Diagnosis Affected Us” –Sylvia
In 2019 I was planning to have a hysterectomy due to my endometriosis, but plans changed when I found out I was pregnant! This was very surprising because I didn’t think I could even get pregnant because of how bad my endometriosis was and when we tried years before it never worked. Continue reading
08Nov 2023
“No Limits” — Lacy
One of the hardest things about learning your child has a disability is the limits that are put on their life. The hopes and dreams you have for them change in an instant. However, once you take a moment to understand what it all means, things come into focus. The shattered pieces that you pick up and and put back together make a beautiful picture that you never would have imagined.
07Dec 2022
“Our Experience of CTD” – Kayla
We’ve shared that Creatine Transporter Deficiency (CTD) can cause seizures, speech, intellectual, and motor delays, ADHD, and autism in people, but it can vary greatly from person to person. So what does CTD look like for our son, Crosby? Continue reading
05Nov 2022
“Awareness” – Lacy
I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob has Creatine Transporter Deficiency. It is a diagnosis we never thought we would get mainly because we had never even heard of it. Continue reading
23Nov 2021
“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 chance to be talking to you again. As this is Epilepsy Awareness Month, I wanted to share some of my thoughts, feeling, and, most importantly, the lessons I am learning along the way. I tried to keep this blog post short but that didn’t work. I also tried to keep it honest, so I did not hold back. Continue reading
05Oct 2021
“Bye, mom” – Nancy
“Bye mom!” These were words I had longed to hear for nearly two years. Our youngest son, Sam, graduated high school in June of 2019. In October of 2019, we sold our home of 20 years in the suburbs and bought a 9-acre farm in the country. It was another step toward providing our nonprofit, Good Works Farm, a space to provide farm-based programming for individuals with special needs, like Sam. Continue reading
21Sep 2021
“Rare Diseases” – Lacy
Being a parent of a child with a rare disease has its unique challenges. There are so many questions that you ask yourself on a daily basis.
Why does my child have this condition?
Why is he not developing like other kids?
Why are there no treatments available?
Why can’t I do more to help him?
These questions change all the time, but the really frustrating part is that the answers do as well. Continue reading
09Jul 2021
“The Carousel” – Nancy
The bell rang, the music started, and we began moving slowly. The expression on his face changed almost immediately, and in that moment, I knew I had made a huge mistake. His horse’s face was frozen in a contorted expression of distress that matched the rider. I hopped off my horse and attempted to calm him, but as he went up and down and round and round faster, his fear only grew. He clung to me with a death grip. I managed to peel the man-child off his horse when at its lowest and sit him in the seat behind him. By then, the operator, realizing there was a problem, had brought the ride to a stop and was standing at the top of the stairs. When he saw that Sam was safely planted on the bench, he gave me a thumbs-up and started the ride again. I climbed on the nearest horse and continued to reassure him from a distance. Continue reading