Knoxville teen, Katelyn Cook, doesn’t let her Down syndrome stop her from achieving her goals and advocating for others, reports 10News.
Cook, an AP student, author, musician, and advocate, wishes to normalize living with Down syndrome, and she plans on doing just that through her writing.
Cook has been writing stories for as long as she can remember.
“I’m actually working on a book right now that I need to finish. And I’m going back to some of my older ones,” she said.
She is now using her writing for advocacy.
“A lot of people though, like, I’ll tell them that I have Down syndrome and they’re like, ‘you can’t have Down syndrome. You don’t look like it.’ But that’s because I have Mosaic Down syndrome.”
Mosaic Down syndrome is diagnosed when only some of a person’s cells have an extra chromosome, not all of them.
This diagnosis is extremely rare. According to Down Syndrome Education, two or three in every 100 children diagnosed as having Down syndrome have the Mosaic type.
“A lot of times I feel certain ways, and a lot of people don’t,” Cook said. “I’m not coordinated. Really, I can’t balance to save my life. I can’t ride a bike or jump rope.”
There are several physical consequences as well, which results in many doctor appointments.
“The jaw problems didn’t start until I was older, but I’ve had ear infections since I was born. And I had sleep apnea diagnosed when I was like nine,” she said.
Cook will be having surgery to correct her jaw next month, which should also help with her sleep apnea.
Due to the high cost of the procedure, Cook has started a GoFundMe.
Despite all the challenges, Cook doesn’t view her Down syndrome as a negative.
“Honestly, I feel like you can live with a disability and still do whatever you want, as long as you do it in a way that works for you, even if you have to change some things,” she said. “It’s challenging, but it’s alright to acknowledge that you have a disability and are still living.”
Cook is using her writing to share her positive attitude.
“I’m trying to set an example for other teenagers to raise awareness for not only Mosaic Down syndrome, but for anything that can potentially make somebody’s life more difficult through writing or social media posts or everything,” she said.
Cook gives this advice to anyone living with a disability: “Don’t look at what everyone else is doing. Look at what you are doing and what you need to do to be able to do what you want to do.”
The South Doyle High School senior graduates this spring. She aspires to become a creative writing professor.