Given the multiple organ systems involved in Rett syndrome, a multidisciplinary approach ideally provided by a dedicated Rett Syndrome Clinic is vitally important to medical care. At home, an individual with Rett syndrome will need constant support from their family. It takes strength and energy to pursue the diagnosis, make an appropriate treatment plan and find people who will support it, in addition to providing all of the physical aspects of direct care giving. Even with all the challenges, there is great joy in raising a child with Rett syndrome. Their love is unconditional. They demonstrate amazing courage, patience and teach us many life lessons without speaking a word.
Care
Given the multiple organ systems involved in Rett syndrome, a multidisciplinary approach ideally provided by a dedicated Rett Syndrome Clinic is vitally important to medical care. At home, an individual with Rett syndrome will need constant support from their family. It takes strength and energy to pursue the diagnosis, make an appropriate treatment plan and find people who will support it, in addition to providing all of the physical aspects of direct care giving. Even with all the challenges, there is great joy in raising a child with Rett syndrome. Their love is unconditional. They demonstrate amazing courage, patience and teach us many life lessons without speaking a word.