Our daughter Amy is a young adult with Ring 18. She is 23 years old. She has one brother Dan (27) and three sisters Shannon (almost 26), Kelly (21), and Katie (almost 18). Our youngest daughter will begin her freshman year of college this Fall so Amy will be an empty nester with her dad Sean and myself!
Throughout our marriage of 30 plus years Sean has almost always had a job that involved unexpected travel so I have been a stay at home mom out of necessity. We’ve lived in Fort Wayne, Indiana since 2001. Shortly after moving to the Midwest we became more involved with the Chromosome 18 Registry and Research Society as a way to learn more about Amy’s condition and to meet other families in the same boat. It has been extremely rewarding to be involved with Chromosome 18. An important early example is Dr. Janine Cody’s research on the benefits of growth hormone treatment for children affected by a Chromosome 18 disorder. Had we not learned about this research through the Registry we would not have known to advocate for growth hormone treatment for Amy with her doctors.
While we haven’t been able to attend each conference, the ones we’ve been able to participate in have been life changing. The families that we’ve befriended, the enormous amount of information that we have learned, and our children getting to know other siblings and reconnecting throughout the years have been irreplaceable experiences. As for Amy, conferences have made it possible for her to meet in person peers with Ring 18 and other Chromosome 18 disorders. The amazement and relief are so obvious on her face while she spends time with her new and old friends at conferences.
As for me I like to read, write, bake, and have meaningful one-sided chats with our two year old Bernese Mountain dog Murphy. I can’t wait to meet or at least chat with our new and old Great Lakes region members.
