The story of Caitlin
After a normal pregnancy and delivery, our baby daughter Callie began experiencing seizures at just 6 weeks old. We were terrified and had no understanding of the cause or what the future might hold. Following genetic testing, we received a diagnosis of Congenital Disorder of Glycosylation, a condition that affects approximately 1,000 individuals worldwide. Callie’s specific type of CDG involves the SLC35A2 gene, which is quite rare and impacts only about 70 people globally. As she is still a small baby, we are uncertain about her future, so we focus on taking each day as it comes and cherishing every moment we have with her, knowing that time is never guaranteed.