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Despite disease, Stevo dreams big — and he usually wins

Sunday, September 13, 2009
(Updated Monday, September 14 - 5:24 am)

GREENSBORO — He’s Stevo, the kid with the big shoe.

He can bowl, golf, swim, play pingpong, throw a change-up, deliver a sweet serve and hit a jumper from beyond the 3-point line drawn in fuchsia-colored chalk on his driveway.

He loves nothing better than beating his little brother, Jacob, or acing someone at Greensboro Country Club, or getting on the mound in the last inning, with the game riding on what he can deliver with his right arm.

But basketball is his game. He loves watching some unsuspecting opponent cop an attitude because he figures this guy with the big shoe has got no kind of shot, no kind of skill.

“He doesn’t think I got game,’’ he’ll tell his mom.

Then he’ll dribble through his legs and deliver a no-look pass or drain a jumper from beyond the lane, pump his fist and yell, “Yes!’’

Players often stand in awe. Players like Shaq and Kobe. That’s Shaquille O’Neal and Kobe Bryant. Stevo hung with them at an NBA All-Star game a few years back in Las Vegas.

Matter of fact, Bryant knows Stevo.

Stevo is no regular sixth-grader. Next year, he wants to try out for the basketball team at Mendenhall Middle School, and he dreams of being a pro basketball player or a pro tennis player.

But when he was much younger, doctors wondered if he would walk at all and recommended that Mike and Stephanie Ludwig have their son’s left leg amputated.

Stephen Ludwig — or Stevo to parents, teammates and friends — would have none of it. He wanted to prove the doctors wrong, that he could play, that he had game.

Yet, look at his feet and legs. His right leg is longer than his left. He has nearly a 5-inch lift on his left shoe, size 4. And his right foot sticks out at a 45-degree angle.

Stevo is 4 foot 5 inches; he should be nearly 5 feet by now. He doesn’t know how much more he’ll grow.

Then there are the tumors in his arms, legs and hands. Look at his fingers. His knuckles are as big as marbles. On his right elbow, a tumor juts out like a broken bone, at least an inch above the skin.

Stevo has Ollier’s disease, a disorder in which the ends of his bones grow improperly and multiple benign tumors form all over his body.

Stevo won’t die from it. At least, doctors don’t think so. But not much is known about the disease. It’s incredibly rare, and Stevo has one of the worst cases.

Consider this: Nearly 6.8 billion people exist worldwide. According to his parents, Stevo is one of 500 people known to have Ollier’s Disease. No one knows why it occurs.

And this: Five years ago, Stevo was told he had an aggressive form of leukemia. Doctors believe it had nothing to do with Ollier’s disease. A month after a swim meet, Stevo found himself in the hospital battling for his life.

But Stevo, ever the competitor, beat leukemia after he received a bone-marrow transplant. The transplant came from his little brother, Jacob, two years his junior. Jacob was the perfect match.

Today, there’s no trace of the leukemia.

He’ll have to deal with Ollier’s disease for the rest of his life, though. He knows people will continue to stare. But Stevo has gotten used to it. At least that’s what he tells his parents.

“They don’t know me,’’ Stevo says. “If they knew me, they wouldn’t care. And if they ask, I tell them, 'I was born with this. This leg is just shorter.’ ’’

The Ludwigs discovered it when Stevo was young, still in a car seat. They thought something must be wrong. His fingers looked bigger than they should have been, and his left leg was a half-inch or so shorter than the other.

Mike, who sells medical devices to local doctors, took Stevo to see a few of his customers. It didn’t look good. The Ludwigs went to Wake Forest University Baptist Medical Center in Winston-Salem.

At first, doctors thought Stevo had a malignant bone cancer, a death sentence of a disease. They were wrong. It was Ollier’s disease. Stevo would live. But live how?

Stevo spent two months in Sinai Hospital of Baltimore. Doctors broke his left leg, put in pins and had the pins turned four to five times a day with a little wrench. Stevo grew nearly three inches in nine weeks.

He spent eight hours a day in physical therapy. That included three minutes every day of therapists bending his legs. Stevo felt pain. Lots of pain.

“They’re breaking my leg! They’re breaking my leg!’’ he’d yell.

Stevo doesn’t remember that. Stephanie does. She would lie on her stomach, a few inches from his face, saying over and over in a calm voice, “Only a few more minutes. Just count, my bulldog. Just count.’’

Stevo was just 3.

When he was 6, he could barely lift his left arm over his shoulder. But he swam for the Lake Jeanette Lightning, and during one meet, he swam the backstroke — a stroke he could barely manage to do.

“Stevo, did you tell your coach?’’ his dad asked.

“Dad, I’m going to do it for your birthday,’’ Stevo told his father, newly 36.

So, Stevo got in the pool. It took him four minutes to get from one side of the pool to the other. He didn’t falter once. As he swam, his father stood beside the pool. Watching.

When Stevo finished, onlookers applauded. And when he got out of the pool, he collapsed. A few minutes later, Stevo told his dad: “I did it. I made it.’’

A month later, Stevo went in the hospital. The diagnosis: leukemia.

Doctors initially told the Ludwigs their son had a 15 percent chance of survival. They were even told to make arrangements for Stevo’s funeral. Every day, they wondered if their son would see the next sunrise.

Then Jacob turned out to be a perfect match. Jacob, the son Mike and Stephanie never thought they’d have. After Stevo, the Ludwigs considered not having any more children.

But they wanted one more. That child, their Jacob, saved Stevo’s life.

Stevo spent three months at Brenner Children’s Hospital in Winston-Salem, and after the bone-marrow transplant, he spent eight weeks at Duke University Medical Center in Durham.

He struggled. But as weak as he was, he told his dad he had one thing in mind.

“Dad, I just want to shoot some.’’

Mike balled up a napkin and turned a spit cup into a goal. And Stevo shot. Then Mike moved the spit cup back. And Stevo shot. Soon, Mike turned an IV pole into a goal and later erected a goal in the hall. And Stevo shot. This time, with a Nerf ball. From 20 feet away.

Once again, as he had done throughout Stevo’s life, Mike gave his son this piece of advice: “If you visualize something, you can do it.’’

Stevo got his love for basketball from his 6-foot-4 dad, who played the sport at Lenoir-Rhyne College. And in 2007, he got to meet Bryant, O’Neal and the rest of the NBA All-Stars during a Make-A-Wish Foundation trip to Las Vegas.

“Show me what you got, little fella,’’ O’Neal told him.

He did.

“Yo, fellas!’’ O’Neal called to his teammates.

They circled around Stevo and watched as he dribbled through his legs and showed what he could do.

“You want to come watch the game with us?’’ O’Neal asked him.

“Sorry, I want to watch it with my little brother,’’ he told the All-Star crew. “Is that all right with you, Dad?’’

It was.

Stevo doesn’t remember much about that trip. He was sick. And for the first years of his young life, he was sick a lot.

Because of his weakened immune system, he lived with a hospital mask around his mouth and stayed out of school for nearly two years.

During that time, he and his mom did everything together: read, played games and bowled three times a week.

And he learned to play tennis — even as he stood on a walker, hooked to an IV pole with a drug that prevented his blood from clotting.

“Mom!’’ he would yell. “Would you please hit the ball right at me? I can’t walk.’’

“Ga,’’ his mom responded, laughing. “You are such a Napoleon.’’

That was a long time ago.

Stevo, the boy doctors thought would never walk, has gotten much better. You can tell by the dozen trophies on his bedroom shelf. He has proved everybody wrong — including his father, who every year wonders how long his son can compete.

Yet, with each passing season, he does. Sports have helped him heal.

In baseball, he pitches and bats first. He has someone run for him every time. In basketball, he plays point guard. He has even dreamed of playing at UNC-Chapel Hill. On his sketch pad, he dreams of something else: dunking.

And in tennis, at Greensboro Country Club, he has played in the No. 1 singles slot. He’s got what his coach calls a “monster serve.’’ When the season starts later this month, his coach says he could be there again.

“I know I can play, and my friends, they forget I have a big shoe or that I had leukemia,’’ he says, lying on his back, twisting the purple shoelace on his high-heeled Nike Air Jordan shoe.

“I don’t think about it really. And I don’t feel sorry for myself. Just like other people, I learn from life, my parents and my friends. I’m learning how to be a person. A person who knows how to live normal and do regular things.’’

And regular things he does, with a basketball, a baseball, a tennis racquet and a pingpong paddle.

Stevo, the kid with the big shoe.

Contact Jeri Rowe at 373-7374 or jeri.rowe@news-record.com
 

Accompanying Photos

Nelson Kepley

Photo Caption: “I know I can play, and my friends, they forget I have a big shoe or that I had leukemia,’’ says Stephen “Stevo” Ludwig, who excels at tennis, baseball and basketball. His tennis coach says he has a “monster serve.&rdqu...

Ollier’s disease

Originally called enchon­dro­-matosis, this condition became known as Ollier’s disease after it was discovered more than a century ago by French surgeon Louis Ollier. He found it when he examined multiple younger patients with large cysts in their hands and arms.

These abnormal growths of bone and cartilage form benign bone tumors, commonly found in the hand and legs, that can be very painful. But the cysts aren’t life-threatening. 

The symptoms usually surface between the ages of 1 and 4.

According to the Journal of Rare Diseases, it is still unknown whether Ollier’s disease occurs because of a single mutation in a gene or a combination of mutations. There is no evidence the disease is passed from parent to child.

Because the disease is rare, it is tough to treat. There are no known cures.

Source: News & Record research

A mother's words

March 25, 2005: A journal entry from Stephanie Ludwig:

It was a beautiful warm day. I laid on the sofa, asked Mike for a pillow from our room and he covered me with a blanket. I dozed off. I had a dream.

In my dream, Stephen said, “Mom, Jacob and I are going to go play.’’ Together, they walked outside, all the while bantering back and forth about who had the best jump shot and cutting up. I heard them playing basketball outside. I could hear every word exchanged. They were having so much fun, being the best buddies as they always had been.

I awoke with them hugging on me.

I realized then it was not a dream. For the first time since last summer, Stephen and Jacob had actually gone outside independently and played. Just as children turn the corners every so many months and years — moving on from diaper bags that are like suitcases to making sure they have a snack on the way to the park to chasing them through the grocery store, placing them in their car seats to telling them to buckle on their own — we have finally turned a corner.

I have finally relaxed, knowing things are moving forward in a very positive direction. Although we have horrific stories of the high probability of a relapse of (leukemia), we are hopeful of a full recovery.

It has been a long and sad journey that is not yet complete. But we have told ourselves from the time Stephen was diagnosed that if he made it to Easter, we could rejoice.

His 100 Day Post-Transplant Anniversary is April 7. We are having a special celebration.

Stephen is doing so well, and so is my Jacob, the silent soldier. I call him my “Puppy from Heaven.’’ What has put the icing on the cake is that right at this very moment, Stephen is on cloud nine. His anticipated visit from his Uncle Dan is coming to life.

They are watching the NCAA Tournament on two TVs Mike has set up outside on the deck next to the fire pit.

Continue to keep Stephen in your hearts. Your love for him has touched me deeply. Your support through the Web site, cards, gifts, donations, thoughts and prayers mean so much to our family. We are not alone, and you have shown that.

SOURCE: www.caringbridge.org, a nonprofit Web service that connects  family and friends during critical illness, treatment and recovery

 

Comments

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beachqueennc

September 13, 2009 - 10:45 am EDT

Mike, you and your family are so awesome! I loved the article and feel grateful to have known you all the years! Tell Stevo to keep on pushing! The sky's probably NOT the limit with him!!!

summer19

September 13, 2009 - 6:39 pm EDT

I met Mike a few years ago when I worked for a local Physicians group and I remember when Steve got sick, Mike never faltered and was always so positive, its nice to read to story about Stevo and to hear that he is doing so well. I wish the Ludwigs and Stevo the best and happiest future. Keep playing hard and never give up. God Bless you all.

tsin002

September 13, 2009 - 10:28 pm EDT

My nephew just seems to never surprise me anymore. As his uncle, I've learned so much from Stephen than anybody else in my 31 years of life. Stephen's can-do attitude, capped with love from his unbelievable family, reminds all of us that life is too precious to just give up, and every passing minute is an opportunity to LIVE life to the fullest.

I owe my young nephew my deepest thanks for teaching me about courage, being resilient, and, most importantly, to never give up!!.

This is one of my happiest and joyous day of my life!

I love you, Stephen!!!

pinkypam

September 14, 2009 - 3:24 am EDT

"Stevo" I was so excited when your Mom called to tell me you would be in the newspaper, but little did I know you would be front page news! WOW! I am so proud of your accomplishments and also proud I have known you & your family for 7, going on 8 years now. I have watched you & Jacob growing up before my very eyes & feel you two are my "Greensboro grandsons" as your Mom says. Stevo, do you know I still have pictures posted on my fridge that you have drawn for me over those years....and they will remain there as long as I live! I hope you keep on with that positive outlook on life....'cause if you do, your future will be the brightest, shinning star ever! You already are a superstar in my book! I love you and your family very much! Miss Pam

MLB13

September 14, 2009 - 8:07 am EDT

You inspire and touch all who is around you. Never stop dreaming, never stop dreaming, dreams come true Stevo!

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