Six months after her son was born in 2009, Jamie Tripp Utitus knew something was wrong: she kept on falling. After a series of tests, the mom of two found out that she had lesions on her brain and spine and was diagnosed with multiple sclerosis (MS). The progression of her illness was rapid, leaving Utitis bed-ridden and unable to move her legs.
Instead of giving up, Utitus started to write. While relearning to walk, she launched a blog, Ugly Like Me. Now, the 39-year-old Westfield resident has penned a children’s book, Zoe Bowie Sings, Despite All Sad Things. The book was written for children like Utitus’s—Zoe , 9, and AJ, 5,—who love someone with MS.
The book (self-published through Simon & Schuster’s Archway Publishing) is available on Amazon. Utitis will be reading from the book at a May 9 event at Well Read Books in Hawthorne.
New Jersey Monthly: Your blog deals with adult subject matter. Why did you decide to write a children’s book?
Jamie Tripp Utitus: I want kids to know what MS looks like and that you can be happy with it. That if you tilt your head a little to the left and you look at it at a more positive angle, you can learn from it.
NJM: Your two kids are the main characters in your book. Why use them as the protagonists?
JTU: There are books on MS and memoirs but there is this hole for kids. I realized that it would make a whole lot of sense to show other kids how Zoe and Meatball—that’s how AJ is known in the book—adapt and get through. Other kids are out there loving somebody with MS and they are just as confused as the adults are but they don’t have heroes to speak to them.
NJM: You raised over $12,000 on Kickstarter to fund the book. How did it feel to get that support?
JTU: When we put the Kickstarter up, it was fully funded within 24 hours, which I never dreamt in a million years. It showed me that the idea wasn’t crazy and that people wanted and needed this.
NJM: The e-book is selling on Amazon for only 99 cents.
JTU: The e-book is what I am most proud of. It was the only thing that I had control of price wise. I just wanted the book to be not only for kids who could afford it, but for everyone who needed it.
NJM: Ugly Like Me was recently named Best MS Blog in America by Healthline. How important is that?
JTU: To get an accolade was a beautiful thing. It let me know that I am reaching people and inspiring people to keep going.
NJM: What’s next?
JTU: I was invited to present the book as keynote speaker at the Doctors 2.0 Conference in Paris, France, in June. After that, Ugly Like Me is next. I did the children’s book for them but now it is time to make Ugly Like Me a book.