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Understanding Eric

When a rare disease cut off Eric Dolch from the world, it also left his loved ones struggling to rebuild their lives.

By Emily J. Minor - Special to The Palm Beach Post



It was a summer of everyday occurrences. A family. Two teenagers. A marriage gone stale.

West Palm Beach couple Craig Dolch and Ava Van de Water were immersed in their middle-class lives, with competing work schedules and kids home for the summer and exciting plans for an upcoming cruise vacation, which they felt would surely ease the impending tedium of July, August and September.

And then the fever hit.

It was both usual and alarming, if such a dichotomy makes sense. Eric Dolch, their healthy teenage son who had just finished eighth grade at the local Catholic middle school, was having a great summer. Happily obsessed with paintball, he also loved to park himself in the corner of the family kitchen, where he would sit at the computer, laser-focused on his video games, listening to a narrowing playlist of music.

“He would listen to the same songs over and over again,” says Alexandra Dolch, now 24, two years older than her brother.

“He drove us crazy that summer,” says his dad, Craig Dolch.

One of the songs he always played? Johnny Cash’s mournful cover of Nine Inch Nails’ “Hurt.”

Now, that seems eerily foreshadowing.

With her husband away on business, Van de Water was in pre-getaway mode. A former real estate and business writer for The Palm Beach Post, she was by then a Realtor on Palm Beach, busily trying to wrap up loose ends before she and the kids headed north to meet Dolch. A few dozen members of her family, still dealing with the death of Van de Water’s mother in late 2003 and then the sudden death of a young nephew six months later, were also making the trip to Bermuda. They were all sailing out of Norfolk, Va.

Bathing suits at breakfast. Boat drinks on the deck. No cellphones.

“Ava just thought we needed to do something fun,” Dolch says. “All we’d been doing was getting together for funerals.”

But Eric. He just didn’t seem right.

‘He just has a fever’

For a few days now, the 14-year-old had been tired and almost distant, with a fever that had spiked near 103. Van de Water wasn’t messing around. She marched her teenager into the pediatrician’s office, where she very plainly explained herself. “I cannot have this boy sick on that boat,” she said.

It was probably a virus, said the doctor. It’ll work its way out. But he gave her a prescription for antibiotics, especially since they’d be out at sea.

That was Friday.

By Saturday, Eric seemed a tad better. Sunday was Father’s Day, and Eric rallied, called his dad, walked across the street to grandpa’s, played on the computer for a while.

But in the middle of the night, well before sun-up that Monday, Van de Water found her teenage boy sitting in the bathroom, staring into space, burning up with fever. When she got him to the emergency room at St. Mary’s Medical Center, an intake worker was taken aback. “You should have called 911,” the woman said.

“911?” thought Van de Water. “He just has a fever.”

The situation quickly escalated into crisis, the kind that frightens you to the bone. (Not because you understand, but because you don’t.) “I knew it was bad, but I had no idea how bad it was,” Van de Water said. There was nothing to see. No chopped-off finger or gouged-out eye. Nobody was standing there with paddles, yelling “clear.” It was the feel of things, the stolen glances, the way nurses and doctors rushed about.

Meanwhile, Craig Dolch was 700 miles away.

A golf writer at the time for the Post, Dolch had been covering the U.S. Open in North Carolina. Tournament play had actually ended the day before, but Dolch and a few other Florida golf writers were taking advantage of a rare treat: playing 18 holes at the magnificent Pinehurst Resort. They had just made the turn on the 9th hole when his flip-top phone rang. It was his daughter, Alexandra.

“Dad,” she said, practically breathless. “The doctors say Eric has encephalitis.”

That was Monday, June 20, 2005.

The handsome kid with the paintball addiction would never make it to his freshman year at Cardinal Newman High School. “He went to the hospital and that was the end of it,” says his sister.

Today he can’t walk. He can’t talk. He can’t feed himself. Cumulative costs for his medical care are approaching $5 million. His dad’s 401(k) is gone. His sister graduated a year early from high school, IB program, second in her class, then went and got herself a college degree. “That’s how she dealt with her stress,” Van de Water says.

And the 1988 marriage that first percolated in the newsroom at The Palm Beach Post slowly dissolved under the weight of heartbreak and disaster.

“The only thing we shared was despair,” Dolch says now.

That, and a love for a boy, all but gone.

A medical nightmare

It wasn’t a mosquito bite that caused Eric Dolch’s encephalitis — although what does it matter, really? “It happened,” says his dad.

Instead, Eric tested positive for “mycoplasma,” a bacteria most commonly present in walking pneumonia. It’s unusual for mycoplasma to settle in the brain, causing the tissue swelling that’s the main marker of encephalitis. When it does, it’s not good.

And the bad news kept coming.

First, there were the seizures — huge, frightening, grand mal seizures, so violent that the medical team summoned religious services.

“I swear, it wasn’t 30 seconds before there was a minister at my side,” Van de Water remembers.

But as things moved along, the real culprit was Eric’s own autoimmune system. It was out of whack, his antibodies attacking his brain — probably because the swelling and the scarring from the seizures were being interpreted as foreign matter.

The only real medical choice? Induce a coma. And in that coma he stayed, for 115 days.

“We threw the kitchen sink at him,” said Dr. Trevor Resnick, the pediatric neurologist at Miami Children’s Hospital, where Eric was moved that first week. “We treated him for everything.”

As one of the country’s leading child neurologists, Resnick easily recognized the dynamic playing out with this family. Pediatric medicine doesn’t always have a fairytale ending. A child gets sick. The parents are desperate and desolate. They’re buried in bills. Nothing is normal.

“They give 190 percent to the kid who has the need,” Resnick said recently. “And that’s hard on a family.”

In this case, Alexandra.

She’d turned 16 that summer — they were to have celebrated her June 25 birthday on the family cruise — and now she was home alone a lot. She studied, drove herself to school, made her own meals, did her own shopping, set her own rules. “I’ve always been an independent person,” says Alexandra, who graduated with a degree in international business from FAU and works in her mother’s real estate office. “They were always at the hospital. It was OK.”

But it wasn’t. Not really. And neither were the uncertainties about Eric’s recovery, which always came around to the same thing.

What would he be like when he comes to?

“We really didn’t know,” says his mother. “I’d ask the doctors and the answer was always the same. ‘We won’t know until we get him out of the coma.’”

Finally — finally — they were able to taper off the sedative and lift the coma. Two-and-a-half months later, the seizures still stalling recovery, Eric was flown to a rehab center in Boston.

Dolch, who’d been given a year off from the newspaper, got a small apartment up there. And the two parents with the pretty house and the beautiful kids and the great professional lives began existing in alternate universes.

“I literally would meet Craig in the baggage claim of (Boston’s) Logan airport and say, ‘Hey, how’s it going,’ ” says Van de Water, who was still working.

“We did not see each other for a year,” he says. “Think about it. That’s tough.”

But Boston was short-lived. Within three months, the rehab center was done with Eric. He was having too many seizures for regular sessions. Back in Miami, there was really only one next step that made any medical sense: Remove the child’s left, occipital lobe and part of the left parietal lobe. His neurology team thought this might stop the seizures. (The relief was only temporary.)

The village back home swarmed into action, building a ramp and a handicap shower stall and widening door frames. They made meals. They sent cards. Anyone inclined to pray, prayed. And after 15 months in various hospitals, when it was time for Eric Dolch to get released, a few well-meaning souls tried persuading his mother that maybe she should rethink things.

Bring him home? Are you sure?

But she’s a pretty, polite girl who grew up on Palm Beach, this one, so she just nodded and smiled.

“My son is going nowhere but home,” she said.

And that he did — 467 days after climbing in the car with a fever, early one June morning.

Does Eric understand? Feel?

Is he in there? That’s the million-dollar question.

Does Eric Dolch know what’s going on?

“The thing that drives me nuts every hour of the day is I don’t understand what he knows,” Dolch says. “Is he in constant pain? Does he enjoy anything? Who wants to live like that?”

Dr. Resnick says it’s hard to know exactly what Eric does and does not comprehend, but he can tell you this.

“He gets depressed,” Resnick says.

Really? How can you tell?

“He cries.”

Carlos Restrepo, 31, the home health aide who spends the most time with Eric, says, without missing a beat, that his No. 1 patient is “absolutely” aware of what’s going on. “Oh, there is no doubt,” he says.

“Oh yeah, he’s in there,” says Elizabeth Keith, Eric’s longtime physical therapist.

But his sister, Alexandra, feels they lost him after the 2008 surgery that disconnected the left hemisphere of Eric’s brain.

They had to, really. It was the only way to stop the constant seizures.

For a long time, before FAU when she was in college in Orlando, Alexandra would come home every Friday to work the weekend shift with her brother. She’d feed him, do his meds, change his sheets, change his diaper. Eventually, she had to back away. First off, she wasn’t sure Eric would even want her doing all that. “I wouldn’t, if it were me,” she says. Secondly, it was consuming her life, both emotionally and in real time.

Today, she really doesn’t enjoy when they’re together.

“I guess I feel guilty saying that, and it’s not that I don’t want to spend time with him,” she said. “But I don’t think he even knows I’m there.”

Enter a team of “angels” — Van de Water’s choice for a word.

It’s not easy to find this kind of help when a family member gets sick. There were duds, for sure. No-shows and aides with attitudes and people you wouldn’t want to leave alone in your house, even for a hot second.

But rather quickly, the family found nursing help from Alexandra Castro and her sister, Carolina Restrepo. For years the two sisters traded the day and night shifts back and forth at the family’s house on the south end of West Palm Beach, always making sure Mr. Craig and Miss Ava had someone there. When Carolina moved back to Colombia, their little brother, Carlos, took the night shift.

Finally, knowing they needed a long-term plan — Eric’s muscles are weak, but his organs are strong — the family agreed in October to move Eric to a group home in Loxahatchee. Restrepo signed up for the day duty.

Every week day, he drives to the home in suburban Loxahatchee, the yellow concrete-block house with the big kitchen and the nice living room and the smaller bedrooms off in the outer wings. He stretches Eric for 45 minutes or so, gets him up, gets him showered, gets him dressed. Carlos fixes his meals, takes him to the movies. (Luckily, they both like action films.)

And while this pair’s communication is nuanced and subtle, almost imperceptible, they have their ways, he says.

“I understand his looks, his expressions,” Restrepo says. “When he’s not having a good day, he closes his eyes and just shuts everybody out.”

At a charity golf tournament back in July, when 144 golfers teed off for the Eric Dolch Children’s Encephalitis Foundation, Eric was there, in his chair, head down, looking perfectly out of touch.

By choice, says Restrepo.

“He didn’t want to be there,” Restrepo said.

What Eric Dolch does like, though, is bubble gum, Cheetos and a good steak on the grill. He likes cloudy, windy days. He loves his pool therapy, SpongeBob SquarePants on TV and Johnny Cash on his headphones.

How can you tell?

His breathing is quiet and easy. His eyes are soft. He might even lift his head, just a tad. And he doesn’t scowl.

Keith, the therapist who specializes in pediatric cases at her business, Young Body Rehabilitation, first met Eric in 2009 when he was still in a coma.

After their years together, he can reach and touch the top of his head, wipe his nose, handle an itch. He opens and closes his eyes, on command. When the dentist says “Open wide,” he does.

He has cortico blindness. That is, he can see but the brain can’t translate the images.

And his hearing? What can he hear?

“It’s his keenest sense,” she says.

Facing the truth

Usually if you get encephalitis, you either live or die. But there’s Eric Dolch, all 6-foot, 4-inches, 185 pounds of him, caught in the middle.

For years, Van de Water, ever the good mother, clung to the hope that he would get better, even when someone would raise their eyebrows and suggest the future might not be so sunny. It took a long time for her to embrace the truth. Too long, probably.

“A year ago,” she says.

A year ago?

“I might have known it three years ago, maybe two,” she said. “But I didn’t admit it until about a year ago.”

Meanwhile, her husband — they’re still married because right now she has the insurance — had known for a long, long time. Today, with his flexible work schedule, he manages Eric’s support care — everything from fighting with the insurance companies to checking in at the group home to hopping in the pool for water therapy.

“It’s a full-time job,” says Van de Water. “I feel really lucky that I have Craig to do that.”

The family has spent close to $1 million of their own money on Eric’s care.

“It basically ruins your life financially,” Dolch says. “If a child lives long enough, you’re going to run out of money — unless you’re Bill Gates.”

For years, Dolch had covered the sport of golf, establishing himself as a respected beat writer. He traveled a lot, sure, and it wasn’t always pleasant to saddle up to the likes of Tiger Woods, especially during Tiger Woods’ unraveling years. But when Dolch started the nonprofit to raise money and awareness about encephalitis, the golf community’s reaction was both quick and mighty. Jack Nicklaus, himself no stranger to tragedy, called early on to lend his support.

After all, professional golf is full of guys who make a living saying goodbye, leaving the wife and kids, missing PTA meetings and dance recitals and Little League games.

But for the grace of God …

“This is as personal as it gets,” says pro golfer Olin Browne. “This is their child, and to have it go on for all these years.”

Of course, through each struggle — the diagnosis, the surgeries, the two steps forward, the three steps back — there’s been a village forming around Eric Dolch. “Eric is our son, but he’s everybody’s son,” says Dolch.

And that’s probably why Restrepo, a guy who sees Eric’s struggles more than anyone else, likes this story. After all, family is family.

It was about a year and a half ago, give or take, and Eric was still living at home in West Palm Beach. Restrepo was on duty, his sister already having said goodbye to the family, Mr. Craig standing at the front door, crying, watching the taillights of her car disappear down the road. “I just knew I’d probably never see her again,” he says.

Restrepo thinks it was probably about 5 in the morning when Eric began to stir. And he wasn’t his usual groggy self.

Eric Dolch was wide awake — and laughing.

“He just started cracking up at himself,” Restrepo remembers. “He was laughing so much that he woke up.”

Restrepo, whose bedside manner is quick and quiet, floated over to his patient’s side and gave Eric’s skin a light tickle. “And I remember, I started talking about paintball and asking him if that’s what he was dreaming about, and he just opened his eyes way up, like, ‘You got it.’ ”

Truth be told, sometimes — years ago — Eric would laugh, completely out of the blue, oddly and without reason. The human brain is a complicated thing, and that laughter was often unsettling because it would precede a seizure. But this wasn’t that.

There were no seizures that day. He was just a kid, having a dream.

“That,” says Carlos Restrepo, “was our very best day.”

You take what you get when someone you love is lying helpless. “I don’t know how to explain it but when it happens, when you connect, you just know,” says his mom.

Maybe it’s when she pops into physical therapy, and nestles in close for her kiss. Or when Carlos puts vintage Johnny Cash on Eric’s ear buds. Or a chilly Sunday morning when Dolch arrives with his usual flourish, juggling his cellphone and some groceries and the prevailing orders of the day. Hi Eric. It’s Daddy. It’s Sunday and the Dolphins are playing today.

“We all search for those moments,” says his dad.

Eight years, and counting.


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