Batten Disease: The Second Book


Back in February I began seriously considering what my second book should look like.  At that time I was about three fourths of the way through a middle grade, humorous adventure story that never quite felt right.  When a fellow author pointed out the advantages of following up a first book with a second book of similar tone, content, and style, I went into deep thinking mode and decided there was a lot of merit to her suggestion.  Much of the argument has to do with establishing a brand and developing a readership and the more I thought about it, the more it made sense.

After I decided this was a worthwhile pursuit I immediately drew a big, huge blank. I already knew that writing the second book was going to require a different kind of fuel from that burning drive that feeds the first book.  And I already knew that I didn’t have a sequel to Crazy in my head, heart, or soul.  So what could I write about that would be serious in tone, easily expressed in verse, and driven by a circumstance about which I felt empathy and passion?

I remembered a minor character in Crazy who had Batten disease, a rare, fatal neurodegenerative disorder.  I had gotten the idea for putting this character into Crazy because ironically, there was a student at each of the two schools where I taught that had this rare disease. Even though I never taught either of these students in any of my classes, I saw them daily in the hall, on the playground, or in the lunchroom and I shared the heartache that all the teachers felt for them. Writing about any subject requires passion and as I noted earlier, often the first book seems powered by an almost magical excess of something akin to rocket fuel.  But who would NOT become impassioned by watching a healthy child deteriorate on every level almost daily?

After a few weeks of preliminary research and early plotting, writing a book that has a main character with Batten disease is beginning to take shape in my head, my heart, and in rough notes. It satisfies my desire to write about something that could possibly help someone by virtue of shedding light on a worthwhile cause. In a brief search, I was unable to find a single young adult fiction book dealing with the subject, so there is a definite need in the marketplace.  Since I will not be writing from personal experience, I know I will need to do some research this time around.  So far, I have been in touch with Laura King Edwards, who has founded Taylor’s Tale, on behalf of her little sister who has the disease, and the Hawkins Family, who have two sons, Brandon and Jeremy, with the disease.  These are both courageous families, dedicated to living quality lives one day at a time under extremely hard circumstances, and to raising money for research and public awareness about the disease.  I appreciate their willingness to talk with me as I work on this project.

I wrote Crazy out of a passionate desire to express the emotions generated by bipolar disorder in my family, and to open dialogue with young adults who may have mental illness in their family.  By the same token, it would be my intention to create a book that could both educate young adults about a rare disease, and appeal to their sense of compassion and understanding of peers with terminal illness.

I’m excited about this venture, and I will love to hear from anyone out there who has had any experience not only with this disease, but any of the many rare diseases with no known cure.


Hey READERS, I would love to hear from you.

Is your MIND FULL of old thoughts or new?





Batten Disease: The Second Book — 5 Comments

  1. Thanks for the comments friends. Carol, I know I will learn tons in the process, just as I have with Crazy. And Jean, I love the idea of looking forward to the sweet victory! I guess we are all in the writing business because of that love of challenge, right?

  2. Sounds like you’ve found a great topic for your second book- a character with a disease that most people have never heard of. I think following up CRAZY with another book in verse is a smart idea, and it sounds like you’re not scared of writing about serious topics. Good luck with your research, and here’s hoping this one writes itself! (we can always hope, right?)

  3. Thanks for your good thoughts, Miriam. I don’t know about this next book writing itself, but I know i will need to do a little more research than I did with Crazy, and I do seem to feel most at home with the verse format. Starting a new book is always a whole new adventure in life and learning isn’t it?

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