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Illness erodes boy's abilities

Despite a bleak prognosis, a mother helps her son battle a rare spinal malformation that has left him in a wheelchair.

By BRADY DENNIS

© St. Petersburg Times, published April 29, 2001


photo
[Times photo: Dan McDuffie]
Johnathan Pritchard, 11, shopping at Toys "R" Us with friend Michelle Friedler, has a rare spinal malformation.
ZEPHYRHILLS -- Johnathan Pritchard wishes with every bone in his 47-pound body that some day he will walk again.

His mother and his doctors simply hope he survives.

He's surely earned the right to both.

Try to imagine Johnathan's year thus far: The 11-year-old spent three weeks in a New York City hospital, mostly paralyzed from two major surgeries.

Then came three more weeks at All Children's Hospital. Then two more at a rehabilitation clinic in Largo.

Then, finally back home in Zephyrhills, he spends two hours every day in physical therapy at East Pasco Medical Center.

Factor in that Johnathan went from walking, to using a walker, to having to use a wheelchair. He no longer is able to attend his fourth-grade class at West Zephyrhills Elementary School.

He has headaches daily. His right lung doesn't work properly, which makes simply breathing a chore.

And, perhaps most devastating, he can use only his left arm, which means it's nearly impossible to play the cherished video games he once dominated.

"But I'm still kind of good at them," he protests.

Johnathan has shrunk to less than 50 pounds. But ask anyone who knows him, and they will say he has a heart that weighs at least twice that much, with courage and wit to match.

"It didn't go very well'

When the Times last caught up with Johnathan, he was breakdancing on his living room floor. He was playing with his PlayStation in his bedroom, which was littered with dirty clothes and Cheez-It crackers and covered in pro wrestling posters and Oakland Raiders gear.

He was packing for a Jan. 23 surgery in New York City. It would be his first trip on a plane, his first time leaving Florida.

At age 5, doctors diagnosed Johnathan with meningioma in his spinal cord. It's a non-cancerous tumor that affects his nervous system. The more it grew, the more it affected him.

Johnathan's past five years had been filled with surgeries, chemotherapy and tests targeted at eradicating the tumor. It kept growing.

But New York held hope. There, Johnathan would be treated by Dr. Fred Epstein, a nationally renowned neurosurgeon at Beth Israel Hospital who pioneered surgical treatment of spinal cord tumors.

Epstein had been featured on Nightline and had been on the cover of Reader's Digest. The Dalai Lama had even asked him to evaluate Eastern medicines.

But when he began surgery on Johnathan, Epstein found the unexpected. It wasn't a tumor after all.

"It was a very unusual situation," Epstein said Friday. "I found he had very unusual vascular malformations. It's a collection of abnormal blood vessels that built up inside his spinal cord. I've done 800 operations on spinal tumor patients, and I've never seen anything like this."

Because the blood vessels don't belong there, Epstein said, they can cause a great deal of scar tissue.

Epstein removed as much of the malformations as possible during the surgery. But he was left with no surefire prognosis for Johnathan's future.

"I cannot predict what's going to happen to him," he said. "I hoped what we did would stop the progression. But getting recovery of function is very unlikely."

There's also a chance the malformations could rupture and bleed, essentially causing Johnathan to have a stroke.

Epstein, who had tried everything he knew to cure Johnathan, admitted the disease even could prove fatal.

"Yes, it certainly could," he said. "It's a tough thing. He's a beautiful, upbeat kid."

When the best doctors in the world are stumped, it's hard for a mother not to get discouraged.

"It didn't go very well," Kathy Pritchard said of the surgery. "It's so frustrating for me. They don't know if he'll ever get much better. They don't give me a lot of hope."

Kathy and her former husband adopted Johnathan almost at birth. His Filipino mother lived with the couple while she was pregnant and later let the Pritchards adopt him.

Jonathan still sees his biological mother, who now lives in Clearwater, and his father, who lives in Tampa. He also spends time with his adoptive father in Bradenton.

Kathy, 44, now spends every day caring for Johnathan, with the help of dedicated friends. She hasn't been back to work at Mary Stewart Affordable Homes in Tampa since the surgery. For her, it is work enough searching for words to explain to her son the fight he faces.

"I haven't told him that they really don't think he's going to walk again, nor the fact he's going to die from this," she said. "Every day I say, "You just have to get up and do this and be strong.' I just want him to keep trying." And he does. Two days a week Johnathan is home-schooled by a teacher from West Zephyrhills Elementary. He goes through two hours of daily physical therapy, after which he usually sleeps or watches TV. In fact, most of Johnathan's day is spent resting.

Kathy Pritchard says she tries to get Johnathan to do at least 30 minutes of simple head and arm movements each afternoon. It leaves him exhausted.

Yet Johnathan pushes himself at therapy each day. He is determined to walk.

He possesses bravery beyond his years. But that doesn't mean there aren't struggles.

When he returned from New York, Johnathan refused at first to go in his bedroom. He couldn't bear to look at all the toys, especially the video games, that he couldn't play anymore.

Then came the realization he might be stuck in a wheelchair for life.

"It's hard because sometimes I don't think I'll ever walk again," he said. "It makes me sad, because I really want to walk."

"We all miss him'

Timmy Waterman asked for his birthday money early this year. His mother, Lori, asked why. "I want to help out Johnathan," he said.

He and Johnathan have been friends and classmates since second grade, Timmy said, and his absence has been hard to take.

"I don't have a lot of boys who are my friends; he's the only one I get along with," Timmy said. "He's always been there when I needed him, so I just wanted to be there when he needed somebody."

Timmy's compassion started a chain reaction.

Waterman's family has held two car washes that helped pay for the Pritchards' trip home from New York and some of their expenses while Kathy is out of work.

"I figured if a 10-year-old could give up his birthday money, we could do something, too," said Lori Waterman, who for Johnathan birthday on April 16 gave him all the tips she made one day at her job as a hairstylist.

His classmates have chipped in, too. They called him in New York to wish him well. They made him birthday cards. They made sure he was there on class picture day.

They even organized a fundraiser and earned more than $500 for the Pritchards.

"He's such a good kid, always upbeat and such a good attitude," said April Connell, one of Johnathan's teachers at West Zephyrhills Elementary. "To me he's just amazing. We all miss him."

Waterman is determined to continue her crusade to help her son's best friend any way they can.

"For such a good kid to be sick, it's hard for me not to cry," she said. "I'm not going to let anybody around forget about Johnathan."

Kathy and Johnathan, a tight-knit mother and son team who love kidding each other, are treading a path unknown. They don't know where his disease will take them.

But you can bet they won't back down from the challenge.

"He's my life," Pritchard said. "I'll do whatever it takes."

Johnathan was too busy Thursday to consider the future. He was making his list for a shopping spree that afternoon with the Make-A-Wish Foundation.

Besides, it was more fun explaining what it's like spending all day, every day with his mom.

"I've been feeling old," he joked. "Because she is old."

-- Brady Dennis can be reached at (352) 521-5757, ext. 23.

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