We are the Anama Family! And we are the Great Plains Coordinators for the Chromosome 18 Registry and Research Society.
This is us.
We are James, Zebeda, Lynn, and Taylor. We live in the Chicago suburbs. We joined the C18 Registry in 2011. James is an administrative assistant for a specialty food broker and a Certified Pharmacist Technician (CPhT). Zebeda is a licensed cosmetologist. Lynn is a kindergarten teacher, and Taylor is a student at Oakton Community College, graduating in the fall of 2024.
This is Taylor.
When Taylor was born, we noticed that he was getting tired easily when feeding. We noticed that his eyes would move constantly as one eye would look straight while the other would be focused off to the side and he would constantly switch sides. He was not meeting the milestones for rolling over, pushing up on his arms, etc. We started to worry that something was wrong but didn’t know where to go for help.
There wasn’t much information about his condition available at the time, and even his doctors didn’t know what he had. We learned eventually that he had low muscle tone, that he had strabismus that would need to be corrected, and that he had some developmental delays. But there was no diagnosis as to why. He was not diagnosed as autistic, nor were there any signs of the more common conditions or syndromes. But regardless, it was recommended to us that he begin physical, speech, and occupational therapies before he starts school.
Taylor was always on the smaller side of the growth spectrum. Even with this prognosis, the doctor said that as long as his height and weight continued to grow along the curve, as low as he was on the chart, he would be fine. He was always amongst the smallest kids in his class, and with him being born before the cut-off for grade placement, he was also amongst the youngest. His teachers would tell us that he would always do his best with his schoolwork and would help others when he could. Yes, he struggled sometimes, but he had the best support system at school, and he met many of the goals his IEP gave him.
As a younger sibling, Taylor followed his sister in the band. He was a percussionist from 5th grade through his senior year of high school. In high school, he played multiple instruments at football games, from the gong and big bass drum to the xylophone, many times without sheet music. His dedication to the band, and his willingness to help others earned him the Semper Fidelis Award for Musical Excellence.
We were told that he was never going to be an Olympic athlete. But that didn’t stop Taylor from participating in the Special Olympics. He earned multiple medals in both Snowshoe Racing and Ramp Bowling, including golds at the state level in both events. He graduated from Maine West High School in 2020 and is taking part in the Extended School Year (Transition Program) helping those with disabilities transition to life after school, learning job skills and social skills. He balances his time with the program with continuing his education in college.
When He Was Diagnosed with 18p-
Taylor was 9 years old when he was officially diagnosed with Chromosome 18p-. When we were told the diagnosis, we were not shocked nor saddened. Both Zebeda and my first thoughts were, “Great. What is this?” The information we received at the time gave us basic information and a list of symptoms. We recognized many of them, and saw a few that worried us, but he never had (or experienced yet).
I looked up the condition on the Internet, and the first website on the search engine was for the C18 Registry and Research Society. There was so much information on the website and we could relate to a number of profiles from families on the site that we HAD to join as a family and add Taylor to the registry. His teachers were grateful for the diagnosis and the reports about his condition. They were now able to come up with a plan for him, and had a template to work with if and when they come across another child with C18.
It would be a few years later that we would attend our first conference, held in 2017 in Naperville, IL. It was an eye-opening experience. Zebeda and I got to meet parents who had raised children with similar conditions. Lynn met siblings of C18 children and forged friendships with many of them and bonded over shared experiences. Taylor met kids and adults with his condition (and others), and for the first time, all of us felt that we were not alone and were grateful for the opportunity. We’ve been to three conferences since and look forward to one day heading to San Antonio to visit the offices of the C18 Society.
As Great Plains Coordinators.
We were honored and humbled when we were asked to consider the role of Coordinators for the Great Plains region (IL, WI, MN, IA, MO) and gladly accepted the responsibility. It is not any one of us taking the job. We fulfill this role as a family. Whether you are a parent, sibling, or even a self-advocate, Zebeda, Lynn, Taylor, and I are happy to talk, listen and be there to support you on your journey. We may not have all the answers, and we will help connect you to those who do. We are also learning and would love to get advice from families who have grown kids with C18.
