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Passion for hoops helps Mark Houppert cope with early-onset Parkinson’s

When they play basketball in their driveway, Kara Houppert doesn’t take it easy on her brother. “He’s not winning,” the standout senior point guard for Webster Thomas says, shooting a glance at Mark, who smiles at the playful jab.

“Some people don’t understand that. But I want Mark to know I’m going to treat him just like a brother and want him to treat me just like his sister.”

That’s all Lori and Greg Houppert have ever wanted, for their son to feel normal, like he belongs. That’s all they’ve ever hoped for since he was a toddler and his toes began to point inward and his legs first began to fail him. When all the tests started and all of the doctors in Rochester and Chicago and New York City started trying to unravel the mystery and find out exactly what was wrong with their first-born child.

“Special needs children just want to be like everyone else. They want to be included,” says Lori Houppert, a nurse at Rochester General. “They don’t want to be special.”

Mark Houppert is, though. Clinically, he’s a 20-year-old with early-onset Parkinson’s disease. He also has learning disabilities, which may have been related to the physical issues that started around age 2½, and he takes a total of 30 pills four times daily. Doctors who have treated him, including key physicians for actor Michael J. Fox, still don’t have all of the answers.

But those who know Mark Houppert say he’s special for other reasons, too.

“The best quality about Mark is he’s happy all the time,” says Rob Kornaker, the 12th-year men’s basketball coach at St. John Fisher College, where Houppert has been team manager the past two seasons. “He’s never complained, never said a word. People can learn a lot from him.”

And Houppert’s cheery disposition is infectious. “He just brightens your day,” says former Webster Thomas hockey star Justin Scharfe, 21, who befriended Mark when they were in high school. “With all the obstacles in his life, he’s a truly inspirational kid. He makes you think about your life, stops you from taking things for granted.”

Houppert started as a Thomas manager for the junior varsity boys basketball team in 2008-09 and then handled varsity before moving on to Fisher. Kornaker and Titans coaches Bill O’Rourke Jr. and Jason Charno all agree that Houppert has a passion for hoops. “I wish every player I ever had loved the game as much as he did,” says O’Rourke Jr., who is in his 35th season.

Face of Parkinson's

Fox, the Back to the Future movie star who was on the hit sitcoms Family Ties and Spin City before stepping away to focus on his health, became the face of Parkinson’s in 1998 when he revealed he was afflicted with the progressive degenerative disease. It affects the part of the brain that controls movement. Fox was 37 then, but through medicine and exercise — a key aspect for Parkinson’s patients to offset the physical and mental affects of the disease — is well enough that he’ll return to TV next fall. He’ll star in an NBC series and his character will have Parkinson’s.

By its clinical definition, Fox had early-onset Parkinson’s, too. Though diagnosed mostly in older adults, the disease is generally discovered in a person’s 40s. Sooner than that, and it’s considered early-onset. Classic signs include tremors, twitching or rolling of the fingers, difficulty walking and maintaining balance and stiffness of the limbs. Houppert has some of those, including a herky-jerky gait, and he may freeze up when he feels anxious. He also has dystonia, which is involuntary, twisting and repetitive arm movement.

About 10 percent of Parkinson’s patients are early-onset, a diagnosis Houppert wasn’t tagged with until just three years ago. He had been considered Dopamine Responsive Dystonia. Dopamine is a chemical everyone has and in the brain it functions as a neurotransmitter, sending signals to other nerve cells.

Fox’s foundation has raised millions for Parkinson’s research, and Houppert can be considered part of that. Two of the top neurologists in the country — Dr. Susan Bressman, the director of the American Academy of Neurology and Fox’s go-to physician, and Dr. Rachel Saunders-Pullman — both saw Houppert in the late 1990s on his first trip to New York City. He was 5. Saunders-Pullman continued with follow-ups and still stays in touch. “I think the world of Mark and the Houppert family,” she says.

Saunders-Pullman saw Mark about three times a year until he was around the age of 10. Now it’s about every two years.

 

Breakthrough

Houppert was so agile and active as an infant, his mother used to say he’d one day be an athlete. “His motor skills were so advanced,” Lori recalls. He was somewhat pigeon-toed, but that’s not uncommon. Mark’s speech wasn’t great as a 2-year-old, either, but it wasn’t a huge concern. “Boys don’t talk as fast,” Lori remembers being told.

But she noticed Mark often folding his hands inward, so at age 3 he saw occupational and physical therapists. They detected some deficiencies so he started therapy. An orthopedic doctor analyzed Mark’s gait and a local neuorologist thought he may have had cerebal palsy. Lori disagreed because she knew his motor skills were significantly better the year before. “As a mother, you have to trust in what you see. You’re with your child 24/7,” she says.

Around age 4, Mark needed braces to keep his legs and feet straight. “I could see he was getting worse,” Lori says. She told doctors, then finally spliced together videotapes of her son to prove it to them. Two days after submitting the video, Mark’s doctor called and agreed. Lori told a doctor that, to her, Mark’s symptoms looked like Parkinson’s. Though odd to give a child dopamine medicine, they tried a few pills. His improvement was instantaneous.

She and her husband remember the details vividly because they thought, Lori says, they were witnessing “a miracle.” It was Columbus Day weekend 1997. “Mark took off down the grocery store lane (running), saying, ‘I like this. I like that,’ ” Greg remembers. In their yard, Mark threw a ball, ran after it and bent over to pick it up without falling.

“Neighbors were going by the house,” Lori recalls, saying, “ ‘Who is that?’ The little girl across the street is yelling, ‘Markie can run!’ ”

Doctors didn’t know exactly what to call what was happening, Lori says, but said to continue it. “We cA call to a dystonia clinic in Chicago led to seeing Bressman and Saunders-Pullman in New York City. “They were amazed,” Lori says. Bressman prescribed the dosage and type of medicine Mark should be on and said they’d treat Mark “as research.”

“He got better. He was looking much better,” Lori says.

Hoops for Houppert

His parents hoped some of Mark’s learning issues might disappear, too, but they did not. He went through Webster’s special education program and graduated from its Individual Education Plan. Socially, though, he connects well with others. Currently, he’s in a post-secondary education program run by the Webster and West Irondequoit school districts in cooperation with St. John Fisher. Students must be between 18 and 21 and have intellectual and developmental disabilities.

“We teach them work skills, social skills and daily living skills,” special ed teacher Debra Botsford says. “We help try to make them as independent as possible.”

Mark can’t read or write much, but he comprehends important words such as exit, stop and help. Botsford calls Mark, “a unique character.” His personality is the byproduct of so much interaction with his family, sister, her friends and his. “He’s made lifelong friends (at school and through basketball) that he’ll never forget,” says Kara, 17, an All-Greater Rochester pick last season who has earned a scholarship from Division II Slippery Rock (Pa.) University.

Mark, who has competed in the Special Olympics, has never broken a bone, but he’s needed stitches a few times to close cuts on his chin. When he freezes up, he doesn’t put his hands out to break his fall.

Charno noticed Houppert’s love for basketball at a recreation program and asked if Mark would like to be team manager. “The (players) really liked him and he just loves being a part of it,” Charno says. That first squad even bought Mark, a huge Los Angeles Lakers fan just like his father, a shooting shirt worn by Kobe Bryant. It’s framed on his bedroom wall, where pictures of him with former Syracuse University stars Jonny Flynn and Paul Harris and one with Bryant also hang. The Houppert family met Bryant after a Lakers game in 2010 courtesy of The Dream Factory, an organization that grants wishes to children with serious illness.

“Sports is everything to Mark,” says his father, and being a manager at Thomas made him known throughout school. “He still jokes that he was more popular than me,” Kara says.

“He walked through the high school and he was king. Everybody knew him,” Greg says. “That’s something you can never take away.”

When he’s not busy with basketball and school, Houppert bike rides a few times a day to stay in shape and does P90X. He is very fit, a key to managing Parkinson’s symptoms. He works out with Fisher players, too. “Did he show you his abs?” Kornaker says. “He loves to show his abs.”

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