Having a child with Usher’s Syndrome can be challenging due to the fact that it is a rare condition and presents unique challenges. Families oftentimes do not know of any other families who have children with this same condition, who could lend support and information to them that would help guide them in their journey. It is said that the best resource for families is other families who have similar experiences. The SD Deaf-Blind Project and the Miller family from SD are attempting to bridge the gaps and help families in the Midwest network with each other.
Interested in learning more and joining the Midwest Families of children with Usher’s Syndrome Facebook site created by Jenny Miller? Check it out here: Click here for Facebook page.