Hi! We're the Meyer family from Orlando, Florida. We have two boys, John born 1988, and Chris, born 1990. At the age of three, Chris was diagnosed with 18p- syndrome. We had never heard of it before, and neither had our doctors. We didn't know what to do for Chris or how to help him.

The Chromosome 18 Registry & Research Society came into our lives in 1994. Chris' paternal grandparents in Schaumburg, Illinois, had learned from their church pastor about an organization that was founded for syndromes on the 18th chromosome. By chance, it was holding its first Annual Conference in Schaumburg that year. How lucky we were!

Chris' grandparents attended that conference for us. That's when our eyes were opened. We all learned so much about chromosome deletions, what specialists to contact, what therapies to begin, what medicine he needed, and how to plan for Chris' future needs. We became educated about our son's disability.

At first, this wealth of information was overwhelming. We had so many questions to ask. That's where the Chromosome 18 Registry & Research Society helped us once again. We joined their Parent Network, which allowed us to call other parents so we could talk to them for advice when we needed it during some tough times. We did not feel like we were the only ones who dealt with these issues.

Since we learned so much from the first conference in Illinois, we decided to attend the Second Annual Conference in 1995, which was held in San Antonio, Texas. This time, we as parents, were able to meet, fact to face, other parents and children who were going through the same things we were with Chris

This Chromosome 18 Registry & Research Society has given us so much. That's why we have chosen to donate our time to the Registry by being a Syndrome Coordinator of the 18p- families. We publish and edit a newsletter called The 18p- Post which is a communication sounding board for those families of children with 18p-. We also send out welcome letters to new families who join the Registry and hope that, if they have any questions, they won't hesitate to call for help.

Chris has made so much progress since we joined the Registry, but we can see that he will always have special needs in his life. This is why the Registry will always be a part of our family…because we know they will always be there to help.