My name is Ellie!!!

By: Ellie

Hi! My name is Ellie. I’m almost 11 years old (in 3 weeks woohoo!) and I’m a Kool Kid! Yeah I know all kids are COOL but I’m officially a KOOL kid! See, I was born with Koolen de-Vries Syndrome. They call us “Kool Kids” for short. I was a mystery to all of my many doctors though until I was 5 years old. Finally a genetic test that hadn’t been done on me before found my Kool diagnosis. Along with my diagnosis comes a whole bunch of health stuff that I won’t get into right off the bat but I will eventually so keep following me! I have KDVS (Koolen de-Vries Sydrome) but it doesn’t have me!

Guess what I do for fun?! I’m a cheerleader on a special needs cheer squad! There are 11 of us on my team and I LOVE it! We do competitions monthly and we practice every week. I love to be on stage and make everyone smile so it’s perfect for me! My favorite part is the stunts and pyramids…I love it when they lift me up super high and I get to wave to everyone!

I recently returned from my dream trip come true…my Make-A-Wish trip to DisneyWorld! It was soooo awesome! I met all of my favorite friends…Mickey, Minnie, Donald, Daisy, Goofy, Pluto and so many more. They were all so nice to me. They are my forever friends.

I’m so excited to share my adventures with you as a PEARLS Ambassador! I just love Mr. Rick and he makes me feel like a beautiful model when he takes my picture.

I’ll always end my writing with “Think Happy” so I wanna go ahead and tell you the reason behind it. I have Epilepsy. When I had my very first seizure at the age of 6 and we got home from the hospital later that day I saw my Mommy crying. I didn’t even think twice…I just walked over to her, put my hand on her arm, looked at her and said “Think Happy Mama”. She cried even more but I knew it was because I made her happy. She even had a shirt made that says “Think Happy”! So, I think it’s a pretty “kool” way to end my blogs don’t you? :)

Think Happy!


  1. Positive Exposure January 17, 2019 at 12:29 am - Reply

    Hi Ellie: We are thrilled to welcome you as a PEARLS Ambassador. You are awesome!!!

  2. Becky April 12, 2021 at 9:21 pm - Reply

    Hi Ellie i am also a cheerleader on a special needs team.

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