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Tyler’s Story

   

Hi my name is Tyler, I’m 5 years old and diagnosed with CHARGE syndrome. The day I was born March 27, 2018 the doctors didn’t know what was going on with me, made mommy and daddy very worried because CHARGE syndrome isn’t very common in our state. It took the doctors two months to figure out my diagnosis. The day they diagnosed me changed my mommy and daddy lives forever because they had to make tough decisions and have a lot of battles with doctors just to figure out what is right for me. Mommy and Daddy are very proud of me and wouldn’t change anything. My journey with CHARGE syndrome is very different and unique in many ways that helps me become a stronger individual. CHARGE syndrome impacts my life for various reasons like lung problems, hearing, vision, and feeding issues, but that doesn’t define who I am! I am the happiest baby with a special personality . I had to face a lot of surgical procedures to help me breathe better and help me get the nutrition I need to grow and become big and strong like Daddy. But the best part is that my Cardiologist, “heart doctor”, said my heart is strong and has no issues. CHARGE syndrome is unique. I had to face alot of things growing up and still will have to face surgical procedures in the future to help understand my situation as a individual with CHARGE syndrome.

Enough about that, about me now I am a 5 year old boy that loves water and video games. I swear I could kick my dad’s butt at video games lol. But I am growing stronger and independent with my parents’ help to advocate for me what’s best.

What my mom would like people to know about CHARGE syndrome:

CHARGE syndrome is a very unique medical diagnosis and has various situations that you will never be prepared for, but it will make you a stronger person as a parent to advocate for the needs od your child and will help you as a human to become a stronger individual to not allow people or doctors to take advantage of you to continue to do surgeries as a learning process because your child is Human not a Guinea pig.