A Virginia Beach mom and her teen son fighting to stay strong in face of devastating disease

Jun. 28--VIRGINIA BEACH

Almost every night for several 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 then 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.

How could she not sacrifice everything to help her youngest son?

"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 a horrific possibility: That he might have a disease that affects his brain. Years of inconclusive tests from different hospital systems followed.

Finally, when her son was 6, Dean received a devastating phone call from Children's Hospital of The King's Daughters.

She was heartbroken. But both she and Dante' found a new resolve.

For more than a decade, their mission has been to advocate for children everywhere like him who are fighting for their lives.

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"God gave him to me"

It was in elementary school that Dante' first needed a wheelchair, though he could still walk. Now, 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, at 17, he can speak but 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 his mother take care of him almost daily.

Sleep is often a struggle for Dante'. When he is in bed, a machine monitors his vital signs. When it beeps, Dean checks on her son. She sometimes needs to drive him to a hospital.

Through the highs and lows, faith has kept her strong.

"I'm going to take care of him because God gave him to me," she says.

Eleven years ago, Dante' was diagnosed with 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. The nonprofit organization helps families deal with diagnoses and offers free admission into annual conferences, which serve as both pep rallies for emotional support and learning experiences. It also connects them with needed equipment like wheelchairs.

People should treat children with the disease no differently than healthy youngsters because little ones who are ill recognize what's going on around them, Kirby said.

"They know that you're there," Kirby said.

In addition to the regular symptoms, children may develop behavior changes, learning difficulties, anxiety and trouble sleeping.

"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."

When Dean learned about her son's disease, she decided she wasn't going to let the crisis crush her or Dante'. A short time later, she found out about an event in Washington about rare diseases.

She didn't have much time -- the gathering was that week. Dean didn't have a hotel and hadn't signed up but decided to go. She set up a fundraising page, made a few T-shirts and took her son north.

"We were going to do something," Dean said.

Dante' and Dean met other families dealing with the disease. They came away feeling less alone.

They also were inspired to educate people about rare illnesses.

PJ Caalim met Dante' and his mother when they were all in Washington several years ago for advocacy work. Caalim has a son with a rare disease that causes the body to reject food.

Caalim saw Dante' smile and couldn't help but say hello. She quickly learned they lived near each other in Virginia Beach.

Dean, 49, is a "Godly woman" who is always positive, Caalim said. That attitude and her determination do wonders when they're raising awareness.

Dante's positive attitude also helps, Caalim said.

"It could be the worst day in the world and he's still smiling," she said.

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Raising awareness

Dante' doesn't get a lot of youngsters seeking him out and asking to play. But he likes video games, making friends and watching television.

He enjoys a good laugh when he watches his favorite cartoons, "SpongeBob SquarePants" and "Tom and Jerry."

In April, Dean took Dante' on a wild outdoor animal safari in Georgia for his 17th birthday. He pointed excitedly as the exotic creatures poked their heads inside the family's van.

When the group passed a camel, someone joked about it being hump day. Dante' let out a bellowing laugh.

"He's a party animal," Dean said.

Dante' recently finished his sophomore year at Salem High where he took visual arts teacher Amanda Smith's class. 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 endure on a day-to-day basis.

As the season ran through the spring, players did their part by wearing denim ribbons that Dean had given out on their equipment bags.

Such acts go a long way for anyone with a rare disease, Dean said.

"When you see Mr. Dante' in the halls, guys, say 'Hi' to him," his mother said.

At that March event, Dante' stood to meet political dignitaries. He also 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," Delaney 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.

On Saturday, Dean and her son will raise awareness and funds for rare diseases with an event that'll include a fitness competition, billiards tournament and other activities. He'll also get a motorcade led by state police.

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.

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