Beating the odds

Kaya is a blind chronic warrior who loves to game.

Kayla Marie's Story

Odessa, Missouri USA

Age: 16-24

A little bit about my journey:

My Diagnosis

Axenfeld Rieger syndrome, glaucoma, hydrocephalus, spina bifida myelomeningocele, tethered cord, fibromyalgia, classical EDS, major depressive disorder, generalized anxiety disorder, ADHD

Time to Get Diagnosed

Most of them I was diagnosed at or around birth, tethered cord took until 2015, classical EDS was December 2019, MDD and GAD were 2016 and ADHD was early 2020

Year I was Diagnosed

See previous answer

Sending Love to

Dr. Sillinger, Dr. Eatmon and Dr. Butler

Hospital I'd Recommend

WMMC, KU and children’s mercy

This is my story:

Before I was even born my quality-of-life seemed low. My parents were told they could abort me because the type of spina bifida I have Is known to be devastating. My parents were told that I wouldn’t be able to walk, they would have to catheterize me long-term and I would have to be saran wrapped while my back was healing because while I was in utero my back was open. There was no evidence or knowledge that my back could close on its own but by some miracle it did. I was born and my back was fully closed with a sack. Even though they said I’d have to be catheterized my whole life I was able to stop after second grade. Along with all of my spinal issues I also had my vision problems which slowly devastated my site. The hydrocephalus was very mild and never required a shunt. The ADHD was never apparent until this year by my therapist. My other mental health issues didn’t arise until 2016 after a traumatic hospital Experience. From 2014 to the end of 2016 I attempted college. I ended up dropping out due to my mental health issues. I tried a second time in the fall of 2018 but that lasted only 2 1/2 weeks. My classical EDS symptoms were not very prevalent or obvious until after my experience in 2016. After that all of my symptoms went into hyper gear. It was since 2016 that I had thought that I had EDS but was only able to find out for sure in December Of 2019. I am now 24, I am blind due to my axenfeld Rieger syndrome and glaucoma.  I have many mental health issues and chronic health problems. I attempted and failed college twice. But I still have goals and ambitions. I want to be an actress/voice actress. I am a blind gamer and I want to be an accessibility consulting entrepreneur and create my own company that consults other companies on accessibility and also Create a game developing company that Makes accessible games for those of all types of disabilities. I am a person who wants to own my own house, wants to own my own car, don’t worry I won’t be driving it. Even though I am disabled, have mental health and physical chronic health issues I am still a person with goals and ambitions. It may take me a very long time but I will achieve them. I also plan to get dental implants in the future, the ARS has affected my dental structures, In the way of causing me to have Very few, weird shaped and small teeth. They are tens of thousands of dollars but I know I can achieve that goal and do it on my own for myself. Even when I was born I was beating odds, and I will continue to do so.

Let’s play 20 questions:

The song that keeps me going is:
The old me, and EdS awareness song by Elizabeth joy and Rachel Wilson on YouTube
I never leave home without my:
My go-to feel better movie is: 
Any sort of good comedy special on Netflix
If I was in the hospital, the celebrity I would most love to visit me would be:
That’s a tough one, either Ellen DeGeneres or Gerard Way
When I need to relax, I:
Watch YouTube or anime and lay down in bed. Or play games while in bed
My favorite food is:
Any sort of creamy pasta without any sort of vegetables
The quote that keeps me going is:
My illnesses do not define me
When I need a laugh, I:
Watch funny stuff on the Internet, YouTube or Netflix
Meet my pets (or favorite stuffed animal):
I have a retired guy dog who has now become my emotional support animal, quite legitimately. If I did not have her to give me support throughout all of this since having her since 2016 I don’t know where I would be
My hero is:
My mom
When I’m having a down day I binge watch:
Some feel good YouTube channels of people that fight their own chronic illnesses, and anime
My favorite book to get lost in is:
I don’t really have one of those, I like to listen to audible books, a lot of them being you tuber books
I want to be best friends with:
The dale tribe and the frey life on YouTube, many different voice actors and voice actresses
The thing I’m most proud of:
My stubbornness to not give up on things
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The amazing people and communities I have met
The most hilarious thing that has happened to me is:
Because of my blindness I once mistook someone’s car for another friends car, thankfully the car I got into was also a friend’s car.
It really means a lot when someone does this:
Think of me in the smallest way without me asking, either reaching out or doing something small for me without being prompted
My favorite social media account to follow is:
Don’t really have a specific one
The advice I would give to myself back at the beginning of this journey would be:
Trust yourself and never stop fighting for yourself
Words of encouragement that I’d give to my fellow warriors are
You can beat this!
Follow my journey:

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