My Journey

Source:  My Journey    Tag:  nephropathic cystinosis
As taken from the post "My Life Story in 250 Words or Less". Here is an overview of my journey so far. (This will likely be fleshed out and added to in the future). 

I seemed like a healthy baby. I weighed 18 pounds at 3 months. Then I started losing weight. I showed other symptoms. After 2 weeks in the hospital I was diagnosed with Nephropathic Cystinosis at 9 months. The doctors told my parents I wouldn't live to my sixteenth birthday.


I was a happy child. I couldn't play the way the other children did so I found my own way. I made up stories. Whether it be with my dolls or reciting the stories to my mom (and then me drawing the pictures), that was my playtime. That and my mother read to me often. At eight I decided I wanted to be an author. I was in the hospital a lot as a child. I was lucky to find friends who understood.


 Two years of high school are a blank to me because of all the pain medicine I took. I had major corrective surgeries on my legs those two years. Against all odds I made it to sixteen. That was a big celebration.   


I went to Pace University and was in the hospital several times during college as well. Summer 2012 I  published my first book. That December was my worst hospital stay. Tetany, hallucinations. . . I graduated college in May. Again, against all odds. I’m nearly 23 years old now. Seven years older than doctors thought I would ever be.  


What is Cystinosis?(From the Cystinosis Research Network). https://cystinosis.org/what-is-cystinosis/symptoms-treatment


<3 Amanda Leigh