A Rare Normal
Lessons learned, pain shared and magic found while living my rare disease version of normal.
Our Shared Hope
Of course, the thought of being on lockdown for two months or longer is hard to truly digest. Many times this week I have been reminded of other times in our life in the last decade…
The World Is Crashing Down
I get asked a lot right now about how I am doing given the corona virus. Most people know me and my son live with chronic rare diseases - diseases that are complicated enough without adding a corona virus to the mix.