Ever since I was little, I wanted to be a teacher. After I was diagnosed at age 5 with leukodystrophy, a rare neurologic disease that affects the central nervous system, that goal no longer seemed realistic. [Leukodystrophy is progressive, and can cause problems with movement, vision, hearing, balance, ability to eat, memory, behavior, and thought.]
There are 50 types of leukodystrophy. I have what's called vanishing white matter disease, which has progressed slowly. At first I had trouble walking and poor balance, so sometimes I would fall. Eventually my right side became weaker, and I wore a leg brace on my right leg. By middle school I needed braces for both legs, then added crutches to steady myself.
SUCCESS AT SCHOOL
I had an individualized education program, or IEP, throughout school, which allowed me to work at my own pace with extra support from my teachers. With the help of many dedicated teachers and therapists, I graduated from high school on time in 1997. After graduating, I went part-time to a community college, where I graduated with an associate's degree in human services in 2006.
While I was a student, I volunteered at an independent living facility—first as a receptionist, then doing filing and data entry. After 16 years, I still work there with the help of my caregiver, Janine Sullivan, who is a dear friend of more than eight years. She helps me answer the phones and prompts me when I need help answering a question.
Now that I'm in the advanced stages of leukodystrophy, I am mostly in a wheelchair. I can still feed myself and get dressed with some assistance. The disease has also affected my short-term memory and my ability to find the right words.
A few years ago, my speech therapist, Kari Star, started thinking about new ways to stimulate my memory and improve my language skills. Knowing how much I like animals, she found stories about animals for me to read and pictures to look at. After reading and talking about animals, we began to craft our own story about a rare white lion named Snowball who lives in the Timbavati region of South Africa. With the help of her friends, she develops the courage to free a group of caged animals. Through bravery and teamwork, Snowball and her friends accomplish a seemingly impossible goal.
A METAPHOR FOR ME
Like Snowball, I've faced many obstacles and challenges, but with the kindness of many people and my own determination and hard work, I've managed to live a full and wonderful life. In fact, with help from Kari, Janine, and my mom, Kathy, I was able to develop my idea about Snowball into a children's book called Snowball's Great Adventure (http://bit.ly/SnowballsGreatAdventure), which was self-published in May 2016.
The book is now on the shelves of local libraries, and money from its sale has been donated to the United Leukodystrophy Foundation (http://ulf.org). What's more, I've had the chance to read the story to children at several bookstores and childcare centers.
I may not be able to teach in a classroom, but with my book I'm teaching others about this rare disease and how to stay positive in the face of it. I'm also teaching children how to read, which is a dream come true.” —As told to Paul Wynn