With the birth of my second grandson in 1998, I was introduced to MSUD. As the day care provider for my grandsons, one with MSUD and the other with Pervasive Development Disorder (PDD), I learned firsthand the special challenges for both. Internet support groups and eGroups were my outside source of information. Messages on these groups soon made me realize the laws in Missouri were more limiting for MSUD than for PDD.
A chance meeting with our State Representative gave me insight into the possibility of changing these laws. With no prior experience, but with advice from the eGroups, I commenced a journey though the Missouri General Assembly. Through the eGroups I contacted as many persons in our state as possible. I prepared an instruction packet with pre-written letters for these persons to send to their legislators. These packets were distributed to others in the state through clinics.
Families were extremely helpful and very willing to unite. By the second year, a bill was passed that will require the insurance industry to cover low protein foods for Inherited Disorders of Amino Acids. The new law fell short of our original goal (it has a $5000 a year cap, with coverage for those up to six years of age), but it is a large step in the right direction. The support groups and eGroups will continue to be used as we pursue our goal. We united for a common goal, and for this I am thankful.