Pastor’s wife raises awareness about Batten disease

by Deanna Cauthen

Laura Balzer, of Stone Mountain, and Dana Gieselmann, of Memphis, Tenn., have been best friends since they met in high school years ago in Birmingham, Ala. 

They went on to graduate and attend college together at Auburn University and lived together after college.  Like many friends, they celebrated all the important milestones together—engagements, weddings and the birth of each other’s children.

In August 2013, Milla, the middle daughter of Dana and Frazer Gieselmann, began to have seizures and in October 2014 was diagnosed with Batten Disease, a fatal, inherited disorder of the nervous system. Due to the genetic nature of the disease, the Gieselmanns were advised to have their other two daughters tested. As a result, they learned that their youngest daughter, Elle, also had Batten Disease. 

“[Milla] had been suffering with seizures for over a year, so I had already come to terms with the fact something was going on,” said Balzer, who is a trained OB/GYN nurse. “When we got an answer, it was kind of like, ‘OK, this is what it is.’

“It was about a month later that I got a text from Dana which said that Elle’s diagnosis was positive, too,” Balzer said. “We just sat on the phone and cried. It was crushing and shocking when you have another one that’s going in the same direction.”

According to the National Institute of Neurological Disorders, Batten Disease typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10, when parents or physicians notice that a previously normally developing child begins to develop vision problems and seizures. Over time, children with the disease will lose their sight, suffer mental impairment, have increasingly worse seizures and suffer a decline in motor skills.

Balzer, who moved to Atlanta from Birmingham last year when her husband, David, became the new pastor at Grace Church for All Nations in Stone Mountain, still struggles with the diagnosis of her best friend’s daughters. 

“Being so far away has been hard for me, but I do what I can do,” she said. “I visit whenever I can. I’ve been going every couple of months.” 

She stressed that people who have friends who are dealing with difficult health issues can help by doing the “small things.” 

“[When I visit], I unload the dishwasher, play with the kids, and spend time with their oldest daughter, Ann Carlyle,” Balzer said.

Another way that Balzer helps is by getting the word out about a new book entitled Voyage to the Star Kingdom that was written by her sister, Anne Riley, and illustrated by her cousin, Amy Grimes. 

Balzer has started an email campaign to help raise awareness of the disease and support for the book. Proceeds from the book will be used to help offset expenses  the Gieselmanns have incurred as a result of their daughters illnesses. 

The official release date is Jan. 12, 2016 and more information about Batten disease and the Gieselmanns’ story can be found, at www.theprowritersstudio.com/bookproject.