Comparing Notes: Transitions are a Constant in Rare Disease
The day you hear that your child has a rare disease your life changes. And the changes just keep coming. From dietary changes, to feeding tubes, to school, and even additional diagnoses. These lead to even bigger changes like moving from one state to another to find the right specialists, coverage, and services.
Brittany and Sanath have been through many of these transitions. They know each other “gets it” and that allows them to talk about the practicalities and the deep emotions of making transitions as smoothly as possible.
Virtual Hugs: Empowerment, Optimism, Hope and Lifelong Connections
The impact of having a rare child can be overwhelming. Parents can find themselves in a dark place and defeated. We welcome back Brittany Ratke who found herself in that place and was struggling. Fortunately, she learned about a fantastic program known as Angel Aid that provides support and self-care skills for rare moms.
Brittany decided to apply to the M.O.R.E. program and raise the funds to attend. M.O.R.E. stands for Mothers Of Rare Experience. This virtual program brings moms together to build relationships, learn how to take care of themselves, and experience different types of therapy.