How Advocating helps me cope with chronic illness and Cerebral Palsy

tylia_flores_cerebral palsy

Tylia Flores's Story

Clermont Florida

Age: 25-36

A little bit about my journey:

My Diagnosis

cerebral palsy

Time to Get Diagnosed

2 years

Year I was Diagnosed

1997

Sending Love to

Dr. Peter Romano and Marc Brown

Hospital I'd Recommend

Jackson memorial

This is my story:

I was first diagnosed with Cerebral Palsy at the age of two years old after weighing 2 lbs. 3 oz. at birth because I decided I wanted to be a summer baby instead of an October baby. Eager to come out in the world and spread my message, I received a birthday gift of my own and it was called Cerebral Palsy – which causes me to have a lack of mobility within the left side of my body and stiffness within my legs .

In other words, I like to say Cerebral Palsy always likes to have a party 24/7 and you never know what the days going to bring or what adventure you’re going to go on. Speaking of adventures, I’ve been on many I have gone to many different doctors and specialists along the way to help with these parties that my brain likes to have. When I was about three years old, I had my first surgery to correct the tightness in my hamstrings that makes it feel like your knees are being jumped on by dancing leprechauns!

By the time I was seven, my hip bone decided to move out of its house and leave the socket which led me to another surgery where the docgtor had to use a new metal plate. For about a year I had to get physical therapy twice a week just to get used to it and I had to stay in a body cast for six weeks! But on the bright side, I got to stay home from school and watch Playhouse Disney till like 3 o’clock in the afternoon… and then my friends would come over and play so I wasn’t really missing out on much.

A year went by and I guess the metal plate and dislocated hip bone didn’t hit it off, so it was time to separate the two.  I endured another surgery where I had to stay in a pillow case for six weeks but this one was more fun because I got to take it off and move around on my knees like a little kangaroo .

Several years passed and I was doing perfectly fine just going to physical therapy two times a week as usual.  But when I reached puberty, I started to notice that my hip started to wanna join the party just like CP did. It got worse and worse and eventually we finally went to Dr. Peter Romano where we found out the devastating news that my hip bone was out of place AGAIN, but this time it was much more severe.  It was further out of the socket. At the time I was in tears.  I picked myself back up and I said to myself on the way home from the doctors appointment that I have to share my story.  I have to make a difference for those going through the same journey, on the same path. You know the world needs my story, people need to hear this is what happens and that they are not alone!

So when I was 18 and I finally overcame the obstacle of trying to find a solution for the chronic illness in the cerebral palsy, I started to advocate for those who have gone through the same obstacles so that they remember that they have the power to make a difference despite the struggles they may have in front of them and embrace their story .

Let’s play 20 questions:

The song that keeps me going is:
Austin by Blake Shelton
I never leave home without my:
Smile
My go-to feel better movie is: 
Crip Camp
If I was in the hospital, the celebrity I would most love to visit me would be:
Blake Shelton
When I need to relax, I:
write
My favorite food is:
Southern fried chicken
The quote that keeps me going is:
Despite the obstacles you face you have to keep writing your story because the world needs it
When I need a laugh, I:
Watch videos on tik-tock
Meet my pets (or favorite stuffed animal):
I have a miniature schnauzer named Hobbs
My hero is:
Ed V Roberts
When I’m having a down day I binge watch:
Speechless
My favorite book to get lost in is:
Dear John
I want to be best friends with:
Squirmy and Grubs
The thing I’m most proud of:
Publishing a book at 16 and using my obstacles to become an advocate
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Connecting with other advocate just like me all around the world
The most hilarious thing that has happened to me is:
Although I've had many experiences the most hilarious experience that sticks out to me the most was when I was in middle school and I had a crush on this boy and I wanted to get his attention while driving my wheelchair out to the buses after leaving gym and I ran into a tree head forward yeah it wasn't fun at the moment but I laugh at it now
It really means a lot when someone does this:
It really means a lot to me when people take the time out to write me handwritten letters
My favorite social media account to follow is:
I can't pick one I have way too many to be honest
The advice I would give to myself back at the beginning of this journey would be:
Be yourself everyone else is already taken and you're beautiful just the way you are
Words of encouragement that I’d give to my fellow warriors are
Despite the obstacles you face you have to keep moving forward and write your story because no one else has that story in the world's going to need it someday
Follow my journey: https://tyliaflores.com

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