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VIRGINIA BEACH, Va. – Almost every night for years, Marlo Dean has helped her son to bed, then stayed awake listening for the machines that alert her when his breathing is off.

She rises before dawn, helping young Dante' Herrera get ready for a new day. Most of his hearing is gone and he struggles to speak or walk.

Family members sometimes tell Dean they don't know how she does it. Her response: Dante' is the strongest fighter around.

"Dante' is the love of my life," Dean said. "That's my buddy, my best friend."

Dean knew something was wrong with her son when he was an infant. Though three older siblings walked before they turned 1, Dante' didn't take his first steps until he was 18 months old.

He was rambunctious, though. So much so that physicians first thought he might have attention-deficit hyperactivity disorder.

It wasn't until Dante' was about 2 that a doctor mentioned he might have a disease that affects his brain. Years of inconclusive tests from different hospital systems followed.

Finally, when her son was 6, doctors determined that Dante' had Batten disease, a common name for a range of rare, inherited nervous system disorders. According to the National Institutes of Health, it stems from a genetic defect that triggers a cascade of problems.

The progressive illness affects an estimated two to four out of every 100,000 children in the United States. Common symptoms include loss of vision and motor skills, seizures, dementia and abnormal movements. Many with the disease die in early childhood. Some may live into their teens or their 30s.

"Everything will slowly fail," said Tracy Kirby, family liaison for the Batten Disease Support and Research Association.

It was in elementary school that Dante' first needed a wheelchair, though he could still walk. Now, at 17, he can stand with assistance but primarily uses the wheelchair.

When he was younger, it was difficult to understand him when he talked, his mom said. Now he expresses himself largely through gestures.

Dante' depends on about 20 pills a day, and he visits doctors at least once a week. That's in addition to nurses who help take care of him almost daily.

"I've spent many, many, many countless nights staying up watching over Mr. Dante' unable to breathe or even get up and go to the bathroom without falling," Dean said. "It's definitely an uphill battle."

But faith has kept her strong. "I'm going to take care of him because God gave him to me," she said.

Dante' recently finished his sophomore year at Salem High where he took a class with visual arts teacher Amanda Smith. He is like other teenagers in a lot of ways, Smith said.

Smith, who coaches softball, brought her junior varsity players to a March event at the school raising awareness for rare disabilities. She wanted them to see what some of their peers experience on a day-to-day basis.

At that event, Dante' stood to meet political dignitaries. He posed for photos. Even as he struggled to force himself upright, he beamed.

That spirit is the epitome of Dante', Salem Principal Matthew Delaney said. "Dante' proves to all of us that each day is not only a great day, but it's a gift that should be treasured," he said.

Dante' used to be a patient of Gov. Ralph Northam, who began practicing pediatric neurology at Children's Hospital of The King's Daughters. Northam has declared June as Batten disease awareness month in Virginia.

Tears swell in Dean's eyes when she thinks about Dante's future. He'll miss out on many typical youthful joys. He'll never drive a car. He may never find romantic love.

But Dante' is determined, Dean said. He can still raise awareness for rare disabilities just by being himself.

And he is going to do that as long as he can.

"We fight and continue to fight on in faith," Dean said.