Meet our 2018 featured patient, Cassidy

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My name is Cass Huff and I’d like you to know that I’m just a regular teenager. The fact that I’ve had 41 surgeries in my 15 years doesn’t mean that I don’t love to do typical things like go to school dances, cheer for my high school football team and treat myself to a mocha at Starbucks.

I also happen to be one of only 150 people in the world with a super, super-rare genetic condition called Conradi–Hunermann syndrome. It mostly affects my spine and lungs, and it made me blind in one eye and deaf in one ear – but I’ve never let any of this define me. Seattle Children’s is the only place in the region where I can get the special care I need – and it’s where I can always count on being seen for who I am. Since I was 1 month old, my care team has been there to help me live a very full life. I feel lucky to have exactly the kind of support I need just a short drive from home.

Even though I’ve spent a lot of time in the hospital, medical details are not what I want to be known for.

I’ve been a professional musician since I was 8, and my ultimate goal is to perform on Broadway. I guess you could say music has always lived inside me. I got my first instrument – a toy xylophone – when I was 2 and taught myself how to play “Twinkle, Twinkle Little Star” and “Mary Had a Little Lamb.” When I was 4, my parents gave me a keyboard and the first song I learned to play on it was Beethoven’s “Ode to Joy.” That same year, I used a wish from the Make-A-Wish Foundation for a chance to sing with the country music band Rascal Flatts to a sold-out Tacoma Dome. From that moment on, I have performed every chance I get. I play the piano, ukulele, guitar, clarinet – and I love to sing. Singing helps me clear my mind and it makes me feel better when I feel down. If I have something difficult to say, it’s easiest for me to write a song about it and sing it to you.