Let’s talk about “suffering.” I have heard that word used in news, media, and interviews to describe people like me. [...]

What’s considered rare in Star Wars? Purple Kyber Crystal! It is considered a very rare crystal to find. No wonder [...]

Here are some phrases I have read in media articles regarding my rare disease. I would like to debunk these [...]

I like to listen to songs to pump me up, calm me down, help me cry, and just express how [...]

It’s International Women’s Day. There are so many women to look up to! First, there are superheroes like Captain Marvel, [...]

It’s Rare Disease Day, so let’s start with how I see the world. I see the world like it’s ready [...]

Yesterday, I went to see my new Congresswoman, Katie Porter, take her community Oath of Office. It was very interesting [...]

In 2018, I made a goal to be heard more. I think it’s important to use your voice so people [...]

My family did something really special this month that combined a LOT of my favorite things: We went on a [...]

I had a very busy November! First, I went to Wichita, Kansas, for the XP Family Conference. It was very [...]

Hi everyone! I have been really busy! One thing I haven’t written about yet is volunteering at the Thrift Store [...]

SOARING DOWN THE RUNWAY AT HER UNIVERSE FASHION SHOW This past week, I got the chance to model at a [...]

  https://youtu.be/3hp3SuiWRN8 PARADE On the Fourth of July, I got a to be in a parade! It wasn’t exactly a [...]

SAD DAY It has been a sad week for my family. Saturday was a very sad day because my Grandma [...]

This week, I had an appointment at the opthamologist - that's the eye doctor. I realized when I was reading [...]