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Teen with rare disease finds cure through family devotion, fundraising

Posted - Dec. 3, 2004 at 2:20 p.m.



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The Dallas Morning News

(KRT)

CARROLLTON, Texas - By all accounts, Ryan Dant should no longer be alive.

Instead, the 16-year-old with a rare disease has become the poster boy for a minor miracle that started in North Texas and has spread across the globe. And in the world of charity fund-raisers, he and his family have done something remarkable - they have put themselves out of business.

"Just because you know the future doesn't mean you have to accept it," said Ryan's father, Mark, who also is a lieutenant with the Carrollton, Texas, Police Department.

In 1991, doctors told the Dants that their son Ryan suffered from Hurler-Scheie syndrome, which affects only several thousand children worldwide. Most die by the time they are teens.

Rather than resign themselves to that fate, the Dants took up golf.

Now 12 years after the first Ryan Foundation charity golf tournament, the family and sponsors have raised more than $2 million. The money kept research labs open, searching for a cure.

It worked.

So far, the money and studies have almost perfected a drug and medical treatment for Ryan and hundreds of other children desperately waiting for treatment.

"In 1991, we were told what our future was going to hold. We were told what was going to happen," Mark Dant recently told supporters at the Ryan Foundation's final fund-raiser.

"You all have given us the ability to think about the future without feeling guilty."

At that crowning fund-raiser in late September, the foundation raised $500,000, the amount needed to complete the final clinical trials for the drug treatment. Ryan will take part in those new trials next year, and his prognosis is brighter.

At age 3, doctors diagnosed Ryan as having mucopolysaccharidosis, also known as MPS 1 or Hurler-Scheie syndrome. Ryan's body cannot produce an enzyme that helps clean out certain sugar molecules from cells, leading to damaging deposits in joints and vital organs.

Each year, the condition affects about 40 newborns nationwide. In comparison, doctors diagnose about 1,000 new cases of cystic fibrosis nationwide each year.

When two doctors, a social worker and a geneticist broke the news to the Dants in 1991, they said Ryan probably would not live past age 15. Until then, the disease almost always proved fatal.

Mark Dant immediately set aside his hopes and dreams for his son: helping Ryan get his first car, seeing him graduate from high school and go to college, watching him get married and have children.

"That all went away. But now it has all come back," he said. "The cool part about it is we get to be Mom and Dad again."

That means more focus on schoolwork. Ryan used to get some leeway on his homework. Household chores also slipped on occasion as the Dants tried to keep things in perspective and provide Ryan a normal life.

Since the first fund-raiser in 1993, Ryan has grown accustomed to being the center of attention, both at galas and in the world of obscure medical research. At school, however, the Hebron High School sophomore prefers to blend in. He manages the wrestling team. He also prefers not to tell his classmates about his condition.

"I don't tell them because they would treat me differently," he said, adding that only some classmates and the wrestling team know about his disease. "I can be like a regular guy with the wrestlers."

Ryan has come a long way in the 6-1/2 years since he began receiving weekly infusions of enzyme therapy. He has grown 15 inches and added 78 pounds since then, unremarkable numbers for a typical teen but astounding growth for someone with Hurler-Scheie syndrome.

"Before, I could pick him out among the crowd of kids when school let out," said Mark Dant. "He was the little tiny guy with the limp. Now I can't find him (without the limp)."

Ryan has endured nine surgeries, including a hernia procedure and carpal tunnel surgery on both wrists. Most of the procedures occurred before he was 10.

Last month, Ryan underwent what could be the final surgical procedure he will require for a long time. Living with the disease caused his fingers to curl inward - a classic sign of his condition. To fix his hands, doctors had to break each finger and insert a series of metal pins that fused his fingers at the first knuckle. By fusing the knuckles, the fingers remain straight and give him more use of his hands.

"I can still throw a perfect spiral," he said shortly before a surgeon at Texas Scottish Rite Hospital for Children removed the final collection of two-inch pins from fingers on his right hand.

Ryan still faces huge hurdles as he grows bigger and older. The enzyme treatment costs about $300,000 a year, a figure based on Ryan's 131-pound weight. With every new pound, the cost will rise. Mark Dant's insurance will cover Ryan only through college.

As Ryan gets older, his heart may suffer the only serious side effects from the disease. His heart valves, damaged before he started receiving medication, may have to be replaced.

The weight of living under the constant scrutiny of doctors has worn on the polite, affable teenager.

"I want to get this doctor stuff over with," said Ryan, who estimates that he has visited the hospital 100 times or more.

At school, Ryan mixes well with the hundreds of other students in his class.

"I'm not the shortest one in school now," he said.

But it is as manager of the wrestling team in which Ryan has found a home. He travels with the team to matches. He stays after school for their practices. He even earned a letter jacket last year.

"I'm proud of that letter jacket," he said.

The next big step involves ensuring that Ryan and other Hurler-Scheie patients get the medicine to the brain, something that a home-based IV treatment cannot do. Ryan and others with the disease will need an occasional spinal tap to get the missing enzyme.

Clinical trials will start soon on the brain treatment, said Dr. Emil Kakkis, the senior vice president of BioMarin Pharmaceutical Inc., who researched and perfected the treatment while at the Harbor-University of California at Los Angeles Medical Center. Starting sometime next year, Ryan will begin getting spinal taps every month to six months.

"The Dants were an incredible inspiration," said Kakkis, whose research would have stopped without the Ryan Foundation funds he received in the early years.

Many people are pulling for Ryan, including notable golf club maker Barney Adams, founder of Adams Golf. He signed on to support Ryan's cause when his business was still growing, and his success has mirrored that of the Ryan Foundation.

"The odds were impossible. Here was a guy facing the longest of odds," Adams said while celebrating with the Dants at their final fund-raiser. "How many things end like this?"

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(c) 2004, The Dallas Morning News. Distributed by Knight Ridder/Tribune News Service.

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