Comparing Notes: Transitions are a Constant in Rare Disease

What a great way to introduce our “Comparing Notes” occasional series!  Who knew talking about G-tubes could be so fun? 

 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.  While they have come to expect the unexpected and are getting better at managing these life changes, it is still very hard.   As they share their stories, you can sense the strength they are giving each other.  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. 

 And they both find positives when they get through each transition.  We hope they help you do the same.

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