They look like us. →

81 • Part 2 of 8 in the Care4-Rare guided introduction — It is one of the most natural things a parent does in the first days after a diagnosis — You go online — You find a support group, a Facebook page, a forum full of families navigating the same unfamiliar territory. You scroll through photographs — And there, in another child’s face, another child’s leg, another child’s arm, you see something that looks like your child. Continue reading They look like us. →

YOU FOUND US →

269 • Part 1 of 8 — Companion pieces that together form the guided introduction to this website — Read in any order — Each piece stands on its own — Or — follow the sequence: it builds deliberately, one page at a time — You are probably here because someone noticed a color on skin — A reddish-purple mark on your child, on yourself, on someone you love. A doctor gave it a name. Maybe several names, over several years.
Continue reading YOU FOUND US →