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Kiersten’s story

I was born on September 21st, 2006 in Kentucky. I was born with a rare genetic condition called the Pierre Robin sequence. I was also born with asthma, autism, and ADHD. I was diagnosed with ADHD and autism as a child.  My autism and Pierre Robin syndrome went largely ignored throughout my academic life, and therefore I relate to undiagnosed/late-diagnosed individuals. Before I got my jaw surgery, I couldn’t drink from a water fountain and I was written up for “misuse” of school property. 


A few years ago, I was diagnosed with PTSD, severe anxiety, and depression. I have had 26 surgeries, and the last two I had should be my last for a while. I’m also partially deaf, I can hear without my hearing aids, but not everything. For example, I can’t hear whispers, but I can hear it when people talk to me. I can't hear thunder, and I can only hear rain if it’s slamming down. I do wear glasses, and I can see but my vision is poor. I can’t read well because of my sight issues, and I legally need my glasses to drive. 


I also have developmental delays and some coordination difficulties. When I say I have coordination delays, think about monkey bars, and all the coordination involved with that skill. That’s something I struggle with. Although this is often associated with Pierre Robin syndrome and autism, it doesn’t technically have a diagnosis, and in that way, I’m kind of a medical myth. That said, I am teaching myself how to swim, ride a bike, and do the monkey bars. I’m a medical mess! 


I’ve been in many different forms of therapy. I began in feeding therapy because I needed a feeding tube as a baby. Currently, I’m only in trauma therapy. Over the years, I’ve had physical therapy, occupational therapy,  speech therapy, intensive physical therapy, and mental-health-related therapy.  


I love Western things like old trucks, horses, animals, sunsets, sunrises, storms, and I especially love to play in the water. I also love swings and anything with movement. 






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Kiersten’s story

I was born on September 21st, 2006 in Kentucky. I was born with a rare genetic condition called the Pierre Robin sequence. I was also...
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