On both March 24 and April 26, 2014 I wrote about Batten disease, because it figures heavily in my WIP. I’m returning to it today as the release time for CRAZY fast approaches (Oct. 20), and I become increasingly aware that the proverbial second book is not coming as quickly on the heels of the first as I would like.

Be that as it may I am plugging along, but have now hit some speed bumps filled with a number of technical questions that need answering before I can move along.  I contacted my friend, Laura King Edwards, who is dedicating much of her time and energy to  promoting research and writing about  her sister Taylor’s battle with this horrible disease. You can learn more on her website, Taylor’s Tale, or her blog, Write the Happy Ending.

I caught up with Laura during lunch recently, where she talked about trying to juggle her own life as a young working professional, writer, wife, marathon runner and perhaps most importantly, Taylor’s number one fan and advocate.  Her own writing has taken a back seat to Taylor’s most recent hospitalization, during which she underwent a procedure that represents a milestone. “It’s not a happy milestone, like losing a front tooth or outgrowing training wheels or getting a first kiss. Families fighting a life-threatening disease have ‘milestones’ they hope they’ll never reach.”

Laura beams with pride when she recounts how her “whip-smart sister taught herself to read at age three.”  Life progressed at a normal clip until difficulties with math in the first grade, and the diagnosis came just prior to entering third grade at the Fletcher School, a school for  children with learning difficulties.  There is more than one type of Batten Disease, and symptoms progress differently for each one.  In Taylor’s case, declining vision was the next hurdle.  Laura remembers when the red-flag went up while attending the state fair in Raleigh, and puzzling over Taylor’s unusual groping for the stairs at night.

I asked Laura to describe the days surrounding the diagnosis, when Taylor was not quite eight and Laura was twenty-four.  She talked about an almost archaic and surreal experience of mailing vials of her own blood off to Massachusetts General Hospital in Boston about six months after Taylor was diagnosed, “when I was ready to deal with it.”   In about four weeks she got the results. She doesn’t have the disease nor will she get it, and when the time comes for family planning, she has a detailed report of the culprit genes and how they figure in her own genetic make-up.

She remembers feeling devastated and hopeless at first, fixated on a web site that listed the birth and death dates of children with the disease.  But it didn’t take long for a healthy anger and energy to take hold in both Laura and her parents, and a belief that they could do something to beat the disease.  Two months after the diagnosis ten volunteers met in a friend’s living room and several months later Laura began the blog. Not long after that, their not-for-profit organization, Taylor’s Tale, went into full swing.  Since its inception in 2007, “Taylor’s Tale has raised awareness and granted more than half a million dollars to support research.”

Every family facing this terrible disease must decide how much information the child dealing with it needs to have.  Batten disease is often fatal by late teens or early twenties.  In Taylor’s case, Laura said, “the family has never talked to her about it and we never will.”  They’ve always attempted to answer the questions about why she must take medications and why this is happening to her.  As Laura put it, we tell her we are fighting the disease on her behalf.

Laura is currently working on her memoir featuring Taylor.  She laughs when she says, “I never thought I would write a memoir.  I majored in English and took the fiction-writing track.  I’m at about 13K words and am shooting for 80K. With that said, all of my research is done, and I have an outline completed and all of my material in hand. So a lot of the hard work is behind me.”  She has in mind to use one of her favorite things–running–as a metaphor, especially honing in on a special race she ran for Taylor blindfolded.  You can read about it on her blog and look forward to the book that she will finish at some point down her busy road.

If you would like to join in the fight against Batten Disease, you can visit Taylor’s Tale and click on the give now tab.

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Hey READERS, I would love to hear from you.

Is your MIND FULL of old thoughts or new?