Mari Grigaliunas is a reporter with Shaw Media in Downers Grove, Illinois. She writes for the Elmhurst, Lombard, Addison and Villa Park Suburban Life weeklies, specializing in community journalism, investigations and features. She believes we all have a role as global citizens– and that hers is to share the stories that remind us of that.

Amanda Werner tends to Becca Collins, a teen living with Batten Disease.

Searching for Nemo

A Community Rallies to Help a Struggling Teen

November 2014

Amanda Werner tends to Becca Collins, a teen living with Batten Disease.

BY MARI GRIGALIUNAS

A little more than a year ago I walked through the doors of Mokena Elementary School into a sea of children chanting, “Just keep swimming!” The hundreds of suburban Chicago students held fish in the shape of the cartoon character Dory from Finding Nemo, waving them in the air.

The experience was more than surreal. Here I was, strolling the halls where I learned how to spell and do multiplication years ago, side-by-side with some friends I probably hadn’t talked to since my recess days.

We were there for Becca Collins, a 15-year-old girl who, like us, used to walk these halls lined in coat hooks and cubbies constructed for miniature people.

In fact, the masses of chanting children were there for her, too. Finding Nemo fan Becca lives with Batten Disease, a fatal nervous system disorder; she fights every day against this inherited affliction.

Just weeks earlier, I had read about Becca’s story on the Facebook page of my childhood friend Amanda Werner, who—as the chanting continued–was now walking next to me with the same look of shock on her face.

Amanda grew up next door to Becca and her family, used to babysit her, and had recently taken on a huge project to help support the freckle-faced teen.

“She was super feisty with super bright red hair,” Amanda says, recalling Becca before she began to show symptoms of the disease.

Amanda says Becca seemed to have no fears as a tot, always keeping her babysitter on her toes as she ran down the stairs or jumped on furniture.

“Nothing was going to stop her,” Amanda remembers.

Becca’s birth was uncomplicated, but at age three her parents noticed their redheaded bundle of energy seemed a little clumsy. She had trouble walking without falling and appeared hyper, even for a toddler. At the time, doctors diagnosed her with Attention Deficit Hyperactivity Disorder (ADHD).

People say, “it’s like riding a bike,” to describe activities that can’t be unlearned. But at four-years-old, sadly, Becca began to do just that. When she started forgetting her alphabet, her numbers, and how to pedal her bicycle, her parents began looking for other answers.

“It was just really confusing,” Amanda says, remembering when Becca started to show what would later be recognized as signs of Batten Disease.

Over a period of three years, Becca visited a geneticist, neurologist, and ophthalmologist, undergoing test after test before she and her family finally found an answer — an answer that brought anything but relief.

Batten Disease is technically the juvenile form of Neuronal Ceroid Lipofuscinoses (NCL), but often includes all ten forms of NCL. The disease kills specific cells found in the brain, retina and central nervous system called neurons. Each form of NCL is caused by a different recessive gene and typically onsets at different ages. But they all progress in basically the same way.

According to the Batten Disease Support and Research Association (BDSRA), “Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.” The disease is ruthless, but scientists are making progress. They’ve identified genes that cause various forms of NCL, and drug and therapy trials are underway.

Becca experienced her first seizure in May 2005 when she was nearing her sixth birthday. Soon she began to seize up to 150 times in one day. Since then, she’s lost her sight and mobility while battling constant pain. Batten Disease patients can often reduce or control seizures with anticonvulsant drugs or use pain medications to lessen their discomfort, but at this point the symptoms can’t be reversed or halted.

While Batten Disease isn’t incredibly common (according to BDSRA, it appears in just two to four of every 100,000 American births), the impact is immense. Countless friends and family members must constantly work to care for those afflicted.

Becca’s parents, Dawn and Mike, are no exception. They work full-time taking care of Becca and their other two children – Michael and Natalie – but they never ask for help.  Amanda calls them a family of “angels.”

As Becca’s condition has worsened, there’s been one bright spot: Becca’s family began to notice that Finding Nemo seemed to bring her comfort, and calm her down.  Becca wanted the film played every night, as she went to bed. If you don’t know, the hit 2003 animated Disney movie is about an overprotective clownfish (voiced by Albert Brooks) who, along with a surgeonfish named Dory (voiced by Ellen DeGeneres), searches for his abducted son Nemo.

While watching DeGeneres recognize a good-doer on her talk show one day, Amanda instantly thought of Becca. “How cool would it be for her to hear Ellen’s voice in person?” Amanda remembers thinking.

She started by posting Becca’s story on the Ellen Facebook page, which was almost instantly buried by other fan posts. Then Amanda began sharing her post with her Facebook friends and quickly a social media campaign emerged.

I felt compelled to help, and so did others. Amanda’s efforts began inspiring hundreds of people with Becca’s story. Soon we were all on a mission. Through fundraisers, friends, acquaintances and strangers alike dropped off collectibles and merchandise to be auctioned off to raise thousands of dollars for Becca’s medical bills. I’ve been there to watch her parents tear up in humble gratitude.

And that brings us back to that day at Mokena Elementry. When one of Becca’s former teachers offered to support the project, Amanda headed to the school expecting to find a few students with some pictures of Dory. What greeted us instead was classroom after classroom of students with hundreds of posters, Dory cutouts, and even one framed print from the movie that must have been borrowed from home.

“To have her brother there watching, that was awesome,” Amanda says of Becca’s younger brother Michael, who bobbed up and down while his school sang a never-ending chorus of support for his sister.

We recorded video of the overwhelming scene, and enlisted others to make their own videos calling for Ellen to invite Becca on her show. Amanda managed to mobilize people across the country in an effort to give Becca the experience of a lifetime, one she very much deserves.

At the height of her campaign Amanda even flew to Los Angeles on her own dime to meet with one of Ellen’s producers, but the meeting never happened. Unfortunately, the staffer’s wife went into labor that day; instead, Amanda left a scrapbook of local news articles and photos for him to look through, as well as the video of people from around the world encouraging Ellen to meet Becca.

The producer did call and thank Amanda for stopping by, but as the months have passed, all she’s received since are assurances that her scrapbook has been passed along to the proper people to be reviewed (and a care package of Ellen gear.)

“To this day I wonder what would have happened if I could have sat there and made them watch that video,” Amanda says.

This past summer, pneumonia sent Becca to the hospital. She’s also now lost her ability to speak. When she was diagnosed, doctors expected her to live to 12-years-old. She’s surpassed those predictions, but there is still no known cure.

Yet none of these setbacks or scenarios has slowed Amanda’s efforts to bring Batten Disease awareness into everyone’s consciousness. Motivated by the viral ALS Ice Bucket Challenge that raised tens of millions of dollars, Amanda is convinced she can do the same, if not more, for those with Batten Disease.

“Even if only ten more people find out about the disease, that’s ten more people that didn’t know about it yesterday,” Amanda says.

Just as Nemo’s Dory speaks to Becca, Amanda, too, is inspired to “just keep swimming.”

Mari Grigaliunas can be reached at mgrigs11@gmail.com.

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