Rare Highlight: Learning to Sit

Today’s Rare Highlight post comes from Anne, the mom of a little boy with the rare disease Atypical HUS. Atypical HUS is an extremely rare genetic disorder that often causes kidney failure, among other complications. Like so many parents of rare children, this mom is handling her son’s medical journey with such grace.

Anne describes the feeling of sitting and waiting so beautifully. If you know me at all, you know that sitting is not my strength. Waiting even less so. Part of being a parent, though, rare or otherwise, is to learn to do difficult things for our babies.

Read her post here: http://sassyhaven.blogspot.com/2015/09/learning-to-sit.html

Rare Highlight: Elsie

Did you know that 30 million people in America are currently living with a rare disease? Many of them and their parents, like myself, blog about their experiences. I will occasionally share some of their stories here.

Elsie is a beautiful little girl living with the rare disease cystinosis. You can read about her on her mother’s blog. And if you are ever looking for a wonderful organization to support people like Jacob and Elsie, please consider donating to NORD, the National Organization for Rare Disorders.