Editor's Note: As we celebrate Apert syndrome awareness month, we thought some stories were in order. Meet Hannah Brown from Fox River Grove, Illinois. She loves going to Myrtle Beach, SC on vacation, kayaking, and shopping. In this reflection she tells us what her life is like with a person that has Apert syndrome.
Thank you, Hannah for helping us raise awareness this month.
By Hannah Brown
Having a Craniofacial difference means facing hard challenges, I was born with Apert Syndrome. which means all my bones were fused together. Sure, I may look different on the outside, but on the inside I sound and act like a normal person. Even though I have limitations, I can pretty much do normal things like everyone else.
I had to deal with name calling, teasing, pointing, constant staring when I was younger because of my facial difference. Now that I'm getting older I still get the stares, but thankfully not so much the pointing or teasing.
In November 2017, I flew solo for the first time. It was awesome. Back when I had the trach, I was always scared of flying by myself with it, but not now. Since 2017, I have flown four times. I'm becoming a pro at flying.
A few years ago I decided to write a book about my life and the challenges of living with Apert Syndrome. The book describes what I went through all these years. The name of the book is Facing the Challenges of Life with Apert Syndrome. I'm taking a break from writing, but will soon get back into working on it.
Life is full of trials and challenges. I know I'll be living with this for the rest of my life. Nothing will limit me from doing the things I want to do and the things I love.
Living with Apert Syndrome has a lot of risks, but I'm willing to take whatever risks God throws at me because I know I can handle anything.