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To Parents Whose Child Was Just Diagnosed With Hurler Syndrome

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.

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