Rare disease double faults young tennis star

By Ron Kantowski

Tuesday, Sept. 2, 2008 | 5:37 p.m.

Two months ago, Hadrien Saperstein had it all, or as much of it as a 15-year-old kid with braces can accumulate. He was the nation’s 63rd-ranked tennis player in his age division. He played No. 2 singles for Palo Verde’s state championship team — and didn’t lose a match all year. More importantly, he had two loving parents, a neat kid sister who admired him and more friends than TV’s Rachel, Monica and Ross ever dreamed of.

With the exception of the national ranking, he still has those things.

What he doesn’t have is use of his legs.

At some point — nobody knows where or when — Saperstein contracted a virus that triggered the onset of transverse myelitis, a rare neurological disorder caused by inflammation of the spinal cord that interrupts communication between the nerves in the spinal cord and the rest of the body.

The result is usually paralysis. Sometimes it’s only temporary.

And sometimes it isn’t.

“It’s like having huge weights on your legs,” said Saperstein as he, his sister Victoire (also a nationally ranked junior tennis player) and his best friend, Zach Bellon, played a card game at the HealthSouth Rehabilitation Hospital — and his mother, Laurence, tried in vain to explain the rules to a visitor, which had nothing to do with her lilting French accent.

“The muscles don’t do what I tell them to do.”

But ever so slowly, they are starting to listen.

Where once he had no feeling at all in his legs, Hadrien can now make the right one bend at the knee. On a recent Sunday, he furiously bounced his right leg up and down, as if he starting a motorcycle or listening to a Chuck Berry song.

He smiled a lot. I figured it might be because he can now bounce his leg on command. But his mom said he smiled a lot even when he couldn’t move his legs at all.

“He’s hoping to play tennis again. He’s recovering so fast, we’re optimistic,” his mother says.

“Wait, work and see. It’s not in our hands.”

• • •

There was no warning. There seldom is with transverse myelitis, which effects roughly 33,000 Americans. About 1,400 new cases are reported each year.

Before June 22, the Saperstein family did not have a family doctor, because it has never needed one. Hadrien was at a pool party when he started feeling weak. His lower back hurt and his legs were tingling. He was taken to an urgent care center. The diagnosis: heat exhaustion, whose symptoms are nearly identical to those of transverse myelitis. Hadrien was given Valium, electrolytes, a cold compress. You’ll be fine in a couple of weeks, he was told.

And he was fine — for a few days, anyway.

Six days later, while playing in a tennis tournament in Huntington Beach, Hadrien called his father in the middle of the night. He felt awful. Mark Saperstein, who teaches tennis at the Las Vegas Hilton, jumped in the family car and drove to California as fast as he could. By the time he got there, Hadrien was shaking. His back hurt. His legs were numb. He could barely walk — or see. He had double vision. Hanging onto his father for support, they struggled to the car and headed for home.

Summerlin Hospital, Sunrise Hospital, University Medical Center, HealthSouth Rehabilitation Hospital ... young Hadrien has been taken from one care center to the next for tests and treatment and diagnoses. There is no cure for transverse myelitis. But there is hope. About one third of people who get it experience good or full recovery, another third experience some recovery and the other third ... well, Hadrien and his family don’t talk a lot about the other third.

Besides, he’s already shown so much improvement. Though still essentially paralyzed from the waist down, he’s standing with the aid of a walker. First, he took a few tentative steps. Now, he’s up over 100. His dad is already hitting tennis balls to him in the parking lot of the rehab center on weekends, when there’s no one around.

He’s young and he’s strong and his attitude is more positive than the monthly meeting of the Optimists. So the hope is that Hadrien will make it into the top third that makes a full or significant recovery. People with transverse myelitis have been known to make improvement for as long as two years after they experience symptoms.

“He says ‘I can be a world champion in wheelchair tennis, I can be a lawyer, I can have my own firm,’ “ says his dad, once a pro tennis player himself in France, where he spent 20 years raising a family with Laurence, a former attorney who has suspended work on her fifth novel (her first in English) to attend to her son.

“Nothing changes,” Mark Saperstein says. “He’s still the same kid.”

You don’t need the acute vision of a chair umpire to see where Hadrien Saperstein gets his rose-colored glasses.

Mark Saperstein says every family has something like this to deal with. Sometimes, it’s a health issue. Sometimes, it’s worse.

He speaks of the couple eating breakfast when a plane crashed through their roof, of a colleague whose mother is fighting cancer, of the little girl in the bed next to Hadrien’s who is autistic and mentally handicapped and just had painful back surgery, although she doesn’t know it.

“And Hadrien’s in the next bed, doing wheelies in his wheelchair,” says Mark Saperstein, the thought of which makes a smile appear on a weary face.

• • •

Medical fund: A fund has been set up to help defray Hadrien Saperstein’s considerable medical bills. To contribute or for more information, click on http://www.hadriensapersteingiftfund.org/.