Shayla and I just came back from attending the 16th parent conference put on by the Association for Neuro-Metabolic Disorders in Ann Arbor, Michigan on May 20. The conference was entitled Parent Forum: Experiences With Metabolic Disorders.
Eight families with children with MSUD attended. The families shared in an informal discussion group during the morning. This was a lively time, with good-natured banter along with serious discussions on diets and sharing the progress of each of our children. The families did not have their younger children along, but Shayla enjoyed being with Amy Whitfield, 23, and Alana Moceri, 16.
Shayla appreciated the talk and slides on "Blood Collection Issues in Metabolic Disorders" given by Denise Pleger, RN. Shayla takes her own blood and learned some helpful hints.She enjoyed viewing the slides showing what happens to the blood dots sent to the laboratory.
As a teen presenter, Alana Moceri shared how she felt about having MSUD. She encouraged parents to give lots of praise and reinforcement to their children which motivates them to reach their goals. Her dream is to build her own day-care center.
- Joyce Brubacher (Copied from the Editorial)