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.

2 thoughts on “Rare Highlight: Elsie

  1. Hi there,

    Thanks so much for sharing our story! There seem to be quite a few similarities between Citrullinemia and Cystinosis. I’m glad it can also be mostly managed, you are doing a great job mamma!

    And I like your blog theme 😉


    • Amanda, I thought the same thing! I often come across blogs from other parents of rare children and I love knowing that I’m not alone. Your daughter is beautiful and you’re obviously doing a wonderful job too! xx

      Liked by 1 person

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