Archive - Rare Disease Girl

Motherhood - My Life's Most Epic Adventure

Happy Mother's Day

24 hrs ago

Reflecting on the AHUS Conference in Disney World

The impact of our personal stories.

May 10

Cultivating Resilience + Sea Glass

Maybe you need to hear this today. Me too.

May 5

April 2024

Good Vibrations - A Playlist

I believe in music's power to make us feel better and in the flow.

Apr 28

Good News TODAY

TODAY featured our little family.

Apr 21

How to Reduce Medical Procedure Anxiety

My tips for soothing those nerves.

Apr 18

Infusion Interview: Zach + Taylor on the impact of their family art project

While Taylor gets her infusion, they reflect on another wild week

Apr 14 •

The Power of Chalk Butterflies 🦋

A family art project to spread love after an incident of antisemitism makes the news

Apr 11

Skiing with a Ghost

A year after the hospital, I get to ski again.

Apr 7

Taylor Health Update - A New Little Mystery

I'm fine. Don't panic. I'm not going to.

Apr 4 •

March 2024

100 Rare Disease Girl Posts!

My favorite "Hacks" for living with medical challenges

Mar 31

Hey Dr. Google - How to Avoid Misinformation

After our doctor appointments, we all hop on Google. So let’s talk about it.

Mar 28

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