If you or someone you know is living with Rett Syndrome in Fairhope, Alabama, there are a number of resources and services available to help. The first step is to contact a family empowerment representative. These volunteers provide emotional support, information and resources to families affected by Rett Syndrome. United Ability's Ability Clinic is a great place to start.
They offer physical therapy, occupational therapy and speech therapy services, and have experience treating children with Rett Syndrome. Clinics that specialize in Rett Syndrome can also help you provide the specific care your child needs. The Alabama Early Intervention System (EIS) is another great resource. They serve children from birth to 36 months of age who have a medical diagnosis that may delay development.
You can also join one of the many Facebook groups dedicated to meeting the unique needs of people who love and care for someone with Rett Syndrome. These representatives can help you find resources in your state and connect with other families in your area. Rett Syndrome is a complex disorder and requires specialized attention and understanding to help your child and family thrive. Your child may be able to participate in studies and trials to advance the treatment and knowledge of Rett Syndrome. The Alabama State Department of Education Transition Services, Alabama Department of Senior Services, Alabama Disability Advocacy Program, and Alabama Disability Defense Program (ADAP) are all great resources for information on transition services and laws. Finally, Accelerate full-spectrum research to cure Rett Syndrome and empower families with information, knowledge and connectivity.
With the right support, people living with Rett Syndrome can lead full and happy lives.