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Teen with fatal disease earns Eagle Scout honors

LITHIA — Everyone from bus drivers to family members and school aids filled the chapel of Grace Community United Methodist Church.

Five full pages of a guest book rested on a podium just outside the double doors, and across from it sat a cake decorated with an image of Jon Miller.

Jon is not your typical 18-year-old. He's spent a teenager's most plentiful possession — free time — hiking 20 miles, biking 50 miles, swimming distances in Georgia lakes and working to make his own community better. But what sets him apart the most is that he does all of it while navigating the effects of a fatal disease that will not allow him to live past his early to mid twenties.

Batten disease is a relentless, genetic illness with no cure in sight. Miller, like most children with Batten disease, developed vision problems starting during his kindergarten vision screening, a symptom that worsened gradually and quickly, and led to a slew of questions from his father, Eric.

"The body does not have the ability to fully produce protein waste," Eric Miller said. "The best way I can describe it is if you didn't take out the trash, and you just kept putting it in one room of your house until it filled up. Then the next week the trash fills up another room and then another room and that's what batten disease does over time."

For seven years, Jon has participated in Boy Scouts as his health deteriorated. Little by little, he lost his vision entirely as well as showing symptoms similar to Alzheimer's disease, Parkinson's Disease, muscular dystrophy and multiple sclerosis, his father said.

With all of that Jon persevered, surpassing the badge requirement of 21 total badges by earning 45, all leading up to his Eagle Scout project.

"It was the intent that we provide a trail for people with disabilities and it turned out beautifully," assistant scout master Bobby Roberts said. "But the other part of that was to raise awareness of Batten disease."

That they did. Through the process of adding a handicapped-accessible hiking trail at Alderman Ford Park and creating QR scanners giving the blind an audio history about the trail, Jon gave the community a glimpse into his life with the illness.

One-by-one his pastor and Eagle Scout troop leaders spoke about Jon's determination and accomplishments, eventually leading up to awarding the highest advancement in Boy Scouting at the church during a June 10 ceremony.

For Jon's dad, the celebration brings mixed emotions.

"I think about all the things we've gone through to get to this point," Eric Miller said. "But I also understand what our future may look like. There's no driving a car, no dating, no prom, no going to college."

But in the time they do have, Eric said he will focus his energy on letting people know about the rare disease, and the fact that there is no funding for research.

"The problem is that almost all the research that's done is funded by families that are doing fundraising or foundations on their own," Eric Miller said. "It's really frustrating. We've been waiting on FDA approval for something to slow the progression for almost a year and a half now."

Likely the most well-known fundraising efforts for Batten disease began in light of movie producer Gordon Gray's young daughters, both of whom were diagnosed with the terminal illness.

The Millers recently created a Facebook page called "Jon's Journey" to chronicle his life and any future fundraisers they may host for organizations like "Beyond Batten and others who focus on Jon's form of Batten Disease, CLN3 or Juvenile Batten Disease.

"I ask people if they've ever known of someone who has survived cancer, and most people say yes, then I ask if they've ever heard of someone surviving Battenfather disease and the answer is no, because it's terminal and we need help."

Contact Kelsey Sunderland at hillsnews@tampabay.com.

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