I might have been distracted when Sifiso asked me to sign the indemnity form. Naomi wasn’t as horrified as she should have been. She tells me she assumed I was mistakenly duplicating the document she had already completed for Yudi. Nope, I had signed off permission for Shaina to roller skate. You heard me. I green-lighted skatesContinue reading “Purim Skates”
Category Archives: Living with a rare disease
Rare Disease Day
I had never heard of Rare Disease Day. Rare diseases used to be an abstract concept reserved for unfortunate people elsewhere. Now the 28th of February is marked in my calendar- an unusual date used to mark an odd day. Our family is new to the Rare Disease community, and we don’t know the rulesContinue reading “Rare Disease Day”