Child born with rare disease now old enough to give back
Diseases
Ear / Nose / Throat Disease, Rare Disease
Issues and Challenges
Elizabeth has encountered: Copay Issues
My Story
Condition: Narrowed trachea
My name is Elizabeth Amato, I was born and raised in a town called Barrington, IL (a suburb of Chicago). I was a sick baby when I was born. I had over a hundred surgeries before I turned five. My parents started to work together as a team to raise me, especially when they found out I was deaf at age five.
My timeline along the surgeries was the toughest.
August 1995, after I was coded (heart stopped), that’s when I became profoundly deaf.
In 1998, I had bowel movement bag for few years because I was born without a rectum.
July 2001, I had my trachea removed after 5 years; I was able to breathe on my own.
In March 2004, I had small intestine surgery twice because the food wouldn’t process properly.
Several years ago, Jan 2013, my stomach backed up with 10lb of bowel movement in my rectum and I needed surgery again.
Eventually, I will have more surgeries further in my life since this summer will be having a bunion foot surgery.
I did not find out I was deaf until I was five by a kindergarten teacher. I joined a deaf program called Sedol after finding out in 1st grade that I wasn’t a good fit at a hearing school. I learned how to sign with my classmates that I grew up with for the next fourteen years, and ongoing. I became an ice skater for 12 years with private lessons when I found out I breathe better in the cold air.
At age six when I got my first hearing aid, I loved it. I always wore it everywhere I went; it was part of me. I did this until I grew up and started to recognize what kind of identity I had not yet found. When I had speech/eating therapy, I could not eat when I had the trachea out because I had to learn how to chew the food to swallow down my throat without choking. When I was born my bottom jaw was pushed back so the doctors had to pull the jaw forward and shut together with my top jaw. Once I had the trachea surgery, my voice box was damaged. Now my voice is normally quiet, and is soft voice like a mouse.
Now I am 25 years old, recently had cervical spine surgery - two herniated discs removed and replaced, one of the biggest surgeries I’ve had. Nice to meet you! And I am happy to give back to patients at any children's hospital (like Children Memorial Hospital as known now as Ann & Roberts Lurie Children's Hospital of Chicago).
My Motivation and Inspiration
My dream is to make sure all children/patients are comfortable with their needs and feel surrounded with comforts. I want to give back in some ways, that's my inspiration with whatever comes along and be able to give back.
If you think I should make a blog or something, please let me know! Feel free to ask me anything.
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