My name is Camilla Downs (pronounced like Pamela, but with a “C”), and I’m mom to Lillian Darnell and Thomas Darnell, who are now adults. I have single-parented them and advocated for them from the time they were 1-year-old and 5-years-old.
Lillian has 18p-, being diagnosed when she was 3 years old after the pediatrician suggested genetic testing, due to Lillian being behind in more than three areas of development. The pediatrician called me as soon as she got the results, letting me know over the phone, rather than postponing until we could get in to see her. After pulling myself together, I found the Chromosome 18 Registry that night while searching online. This was before facebook, and social media groups, and I joined The Registry shortly thereafter. I spent time observing the conversations in the Yahoo listserv before jumping in, introducing myself, and asking questions.
I am a Project Leader and Family Navigator, having been with Family Navigation Network since February 2022. Family Navigation Network is a project of Nevada Center for Excellence in Disabilities, which operates within the University of Nevada, Reno.
I am a certified as a Special Needs Life Quality Coach, and a bestselling author, indie publisher, and prior to becoming a mom, I had a career as a paralegal, working at The Pierce County Prosecutor’s Office - Civil Division in Tacoma, Washington. I consider myself to be a master improviser and problem solver. I can access a situation, nail down the tasks, take action, and get results.
