0512: Hearts of Hope

By MARY ELYSEE VELASCO

 

There’s a large, looping driveway, an ornate, frosted glass door, wide windows welcoming warm sunlight in and a grand piano waiting to be played. There is no doubt that Gainesville resident Rick Staab is blessed with a beautiful home, but inside houses his even more beautiful family.

His wife Michelle can be found doting on their three children. Outgoing 14-year-old Tyler, bright 11-year-old Samantha and bouncy 7-year-old Luke liven up the Staab home. Their two playful chocolate and brown Labradors, Gator and Tebow, top off their family. Husband and wife, three kids, two dogs. It’s perfect.

Yet, this beautiful family faces what Rick Staab calls an ugly-looking disease every day. It began in the most unexpected place: their backyard.

Rick pointed out the sliding doors to the back of the house.

“It was right here,” he said. “My family was kind of bulletproof and then everything changed overnight with a little thing.”

He recalled a distant, February 2005 day when sporty and spirited Tyler, only 7 at the time, was shooting basketballs into a little, plastic hoop. Rick, ever the proud father of his rising straight-A student athlete, stood at Tyler’s side and gave him tips on how to improve his shot. Rick noticed something was not right with his boy.

“I was trying to tell him to bring his elbow in. It would shake,” Rick said.

Tyler’s elbow would not stop shaking. Concerned, Rick asked his father, who was a physician, if Tyler’s restless movements were normal. Following his father’s advice, Rick and his wife decided to have their son’s condition checked out.

They went all over the place. From Shands Teaching Hospital in Gainesville and Wake Forest in North Carolina, to Emory in Atlanta and Columbia in New York, no institution could figure out what was happening to Tyler despite a number of tests.

Rick and Michelle soon discovered Tyler was hiding other symptoms so that they would not worry. Tyler taught himself how to write with his left hand after he could not hold his pencil with his right—it went unnoticed by his parents and teachers. In the coming months, Tyler’s debilitating condition forced him to press his thumb under his jaw in order to talk. Things continued to worsen when he could no longer write or walk.

Finally, Dr. Michael Okun of Shands Hospital offered answers.

“I remember thinking, ‘We don’t know what this is. Is he going to die?’” Rick Staab said. “It went from very fearful to finding out a horrible diagnosis.”

The diagnosis? Dystonia.

Dystonia is a rare movement disorder that occurs when the brain sends the wrong signals to the muscles. The body—hands, arms, legs, neck, torso, eyelids, jaw, vocal chords—twist involuntarily into abnormal, painful postures as a result.

Rick explained that when people go to pick up an object, one muscle contracts and one relaxes. Dystonia patients may have two contracting muscles at the same time.  This causes limbs to flail uncontrollably and to get those movements under control patients may end up locking. Rick demonstrated locking by bringing in a swinging arm firmly to his chest.

The contortion and distortion can turn a patient into a human pretzel.

“It makes it look worse, makes it look ugly and makes it more difficult to understand,” Rick said. “They think mentally there’s something wrong just because their bodies are twisted a little. It couldn’t be further from the truth.”

Mentally and physically, dystonia patients develop normally. Muscles and psyche are fully functional. Minor mix-ups in brain signals cause major issues. Unable to communicate as well as others, dystonia patients essentially become trapped in their own bodies.

Daily habits can become daily battles. Using the restroom, brushing teeth, getting water from the refrigerator, flipping the pages of a book and turning on the TV all become obstacles.

Rick and Michelle were ready to rise to the challenges. Instead of treating Tyler’s diagnosis as something to fear, they faced it as something to go after and fix. Rick and Michelle would stay up all night on the Internet. They quickly learned that there was little research being done on their son’s rare disorder.

To change this, they co-founded Tyler’s Hope for a Dystonia Cure in 2005. Tyler’s Hope is a non-profit organization that focuses on finding a way to cure and prevent dystonia through funding neurology research and creating awareness.

“You’d do anything to help your kid,” said Rick. “Everybody dreams of their kids doing better. The things they have to struggle with…it makes no sense why they have to.”

The first fundraiser Tyler’s Hope hosted was a golf tournament. After raising $250,000 the first year, it has become a signature annual event. Other events include wine tastings, concerts, dinners and other occasions that outside individuals hold to donate to Tyler’s Hope.

One favorite yearly occasion is the Summit.

The Summit, usually in March, broadly takes the “Manhattan Project” approach to finding a cure for dystonia. Tyler’s Hope pays and invites all the top dystonia researchers to come to the University of Florida and the McKnight Brain Institute to create a giant think-tank. For two days, these scientists discuss ideas and share studies. Rick said that Tyler’s Hope challenges these scholars to come up with different methods to tackle dystonia. If their ideas are approved, Tyler’s Hope will fund their work.

Rick and Michelle’s need to find a cure for dystonia became increasingly urgent.  About three years after Tyler was diagnosed, their daughter Samantha began to show symptoms of the disorder. Samantha was 7 at the time of her diagnosis—the same age that her older brother Tyler was when the Staabs first learned of dystonia.

Rick keeps a close eye on his youngest child Luke, who is now 7 himself.

“Every day that passes is a blessing,” Rick said. “I was preparing myself to see the symptoms on December 1, his seventh birthday. We still don’t know what’s in store for him.”

Although the future is uncertain, Tyler’s Hope has made huge milestones in the present. Tyler’s Hope has funded nearly $2 million dollars worth of grants for research. Harvard and Emory have found a more effective way to conduct surgeries to treat dystonia patients from the money provided.

A registry for dystonia patients was even developed from one of the think-tanks.  Institutions will now have a list of patients that are available to run clinical trials of new treatments. Prior to the registry, it would have been hard to group patients of such a rare disorder for research.

Above all, Rick is most grateful for the awareness that has been spread about dystonia. He hopes that the efforts of Tyler’s Hope will teach people not to treat his children as different or scary. He also believes that awareness will encourage new researchers and graduating students to become involved in the hunt for a cure.

Regardless of the trials this family endured, it is evident that family is the most important thing to the Staabs.

Framed photographs of the children hugging pop up like little surprises from corner to corner of the house. In each room, there is at least one captured moment of happiness.

“We’re our own team,” Rick said. “I would never want this challenge for anyone, but…we have a healthy appreciation and understanding that we’re very blessed…”

He and Michelle have been married for 17 years. She drives their children to all of their different schools, to projects and extracurricular activities. When Rick returns home from work, they all do something together as a family. Rick witnessed people go through far less and have their marriages broken up, but he and Michelle have focused on being closer. To him, they are a true testament to the saying “two heads are better than one.”

Rick speaks highly of all his children. Luke is his tiny, explosive ball of energy who is always on the go. Samantha is his competitive, serious, hardworking lovely lady who still enjoys laughing. Tyler is his witty genius who enjoys being around people. Rick said that Tyler could be mistaken for being older because of how bright he is when he speaks.

Today, Tyler can no longer play sports, however he is still on top of his game. His sport has become school and Tyler has qualified to the state finals science fair.

This six-year struggle is taxing, but Rick thanks his wife, kids, friends and community for standing together.

“This community, even before Tyler’s Hope and my children’s diagnosis, was very giving and very involved,” Rick said. “I wouldn’t imagine raising my children or being married somewhere else.”

 

 

For more information on Tyler’s Hope Foundation, and how you can help, visit www.tylershope.org.