When I meet or talk to a family whose child is newly diagnosed with Hurler syndrome or another rare disease, I am reminded of my first days and weeks after diagnosis.
Years later, I can remember the turmoil of my thoughts, my feelings and my emotions. I remember being up all night, crying most of the day, and playing all those what-if games in my head.
I know how hard those days are because I have been there. and while I want to offer support and words of wisdom, I also don’t want to give false hope or promises.Read more on themighty.com