Why does he have glasses so young? Why is he small for his age? What is Lowe Syndrome?
These are just some of the questions I get asked often in regards to my son, Noah, who was born with this rare, genetic condition in July, 2011.
I am a writer and since I made the decision to leave my job at NASA to care full-time for my son, I’ve had a little more time to write during his down times and created a children’s picture book to introduce Lowe Syndrome.
Lowe Syndrome primarily affects the brain, eyes and kidneys. The vision of the book is to give a basic introduction of this rare condition. I am envisioning the last page of the book to be a lift-the-flap page, similar to what you find in toddler books that will go into more detail of the syndrome in simplified terms that both children and adults can understand. This book is intended to teach others about the rare syndrome and emphasize we are all different and that’s OK.
I have a page on Fundrazr.com to raise $5,000. Money raised will go toward finishing the illustrations and begin the process of getting this book professionally self-published. The more I raise, the better quality the book and get more copies ready for distribution. My plan is to get this book to schools, libraries, nonprofit organizations that focus on disabilities and rare conditions, and available online.
If this book is successful in getting printed and distributed, I plan to write more books in the same manner on other rare conditions to create a series. There are many rare diseases out there that need a voice and why not do that in a fun and creative way?
I am seeking your support of the book project, Sittin’ by the Playground Oak Tree. You can read more about this project and read the children’s story on Lowe Syndrome by visiting, https://fundrazr.com/
Your support will enable me to complete this exciting and important project and will make a difference in the lives of boys with Lowe Syndrome by spreading awareness of this rare disease. More awareness creates more understanding.
About the Author
I have always had a creative mind. All the way from writing stories about math numbers (yes, this is true) in middle school for extra credit to writing PSA scripts for astronauts in my first job out of college. I grew up in the small beautiful mountain town of Waynesville, North Carolina. I went to college at Western Carolina University and studied Communications. Nearing graduation, I was honored to interview at NBC Studios in NYC to be an NBC Page (you know, Kenny from 30 Rock) and while I didn’t make it to the next round, I did have the opportunity to interview for another full-time position and almost took it! Instead, I choose a full-time position in Houston at NASA Johnson Space Center and there I spent nine wonderful years as a Public Affairs Specialist. I enjoyed my time at NASA and all the various responsibilities I held over the years. I left in 2012 to care full-time for my son who was born with Lowe Syndrome. Lowe Syndrome is very rare and mainly affects the brain, eyes, and kidneys.