Mucopolysaccharidosis

When our little hero Ryan Dant speaks, he sounds like a chirping bird--only happier. "Yes, sir, we had a game today," he says.

He's 13 years old, a baseball player, 4 feet 7 inches tall, 85 pounds of excitement. "I hit a ball out into center field and I got on base."

He plays second base and left field for . . .

"The Bombers."

Maybe because he lives near Dallas, Ryan's favorite team is the Texas Rangers. His favorite player is . . . "Alex Rodriguez. He's a good shortstop and hits the ball really hard."

Behind Ryan's house there's an open field that runs toward a small creek in front of tennis courts. Back there he plays catch with his father, Mark, a police lieutenant in Carrollton, Texas.

"I hit golf balls out there, too."

The first time Ryan had a golf club in his hands, he went behind his house and thought it would be neat to hit a golf ball so far it flew over the field and over the creek and into the tennis courts maybe 120 yards away.

"Golf, it's easy," he says.

The ball just sits there.

"Easier than baseball."

Try as he might, though, his longest golf shots stayed on this side of the creek.

In October 1992, the Adams Golf Company was three people and one telephone with nobody calling except wrong numbers and insurance salesmen.

For staying-in-business money, Barney Adams, the boss, left the shop every afternoon to do club-fittings and repairs. On his door Adams hung a sign: NO SOLICITATIONS.

Mark Dant walked past the sign. The year before, at a routine physical checkup, a pediatrician thought Ryan Dant's head and liver were abnormally large. So he sent the boy, then 3, to a geneticist whose tests showed Ryan had a genetic disease, mucopolysaccharidosis, known as MPS 1.

Because his body lacks an enzyme that breaks down sugar, his cells were overwhelmed by deposits of sugar molecules. MPS 1's damage is progressive and complete. Joints lock up. Organs fail, including the brain. By age 6, Ryan suffered headaches so severe he would throw up until he fell asleep, exhausted. He was small; he ran with a stiff-legged gait; he couldn't raise his arms to take off a T-shirt; he couldn't hold a baseball bat, because his fingers were fixed in a curl toward his palms. All the while, Ryan's parents knew it would only get worse. "We were told Ryan would not live past 10," Mark Dant says.

The day they heard those words, Dant and his wife, Jeanne, went home and began a period of sorrow and grieving that lasted months. "We didn't do anything," he says, "but close the door and cry."

By October 1992, grief had been supplanted by the Dants' determination to give their son a chance to survive a disease that seldom allowed any child to live past their teens.

The Dants had done enough homework to know that such a chance would come only if science found a cure for MPS 1. They also knew that scientists rarely find a cure unless someone else first finds money for research.

That's why, despite the NO SOLICITATIONS sign on the door, Mark Dant walked into the storefront shop of Adams Golf. Not that he expected much. He'd played golf a year; he knew nothing about some company working out of a shopping complex. Dant had turned to the Yellow Pages and looked up "golf" because he'd heard that golf tournaments were a good source of charity money. Certainly, the Dants needed to do better than the $342 raised at their first event, a bake sale.

Barney Adams remembers: "I was walking a box of clubs to the front of the building when this young guy came in. Mark had been going door-to-door trying to raise money. He told me Ryan's story, but at that time I probably had less money than he did; our annual sales may have been $150,000. So I said, 'Why don't you auction off some clubs and make some money?' We gave him three or four clubs."

The Dants' first weekend golf event raised $25,000. That's small change in the high-dollar world of scientific research. But to the Ryan Foundation for MPS Children--established by the Dants after a visit to a conference of MPS children and their families--the $25,000 was huge.

It meant hope.

Golf tournaments became the Ryan Foundation's primary source of money, the proceeds rising from $25,000 to $75,000 to $150,000. Early on, the money went to the National MPS Society. "Every year Mark would come by," Adams says, "and we'd give him more clubs."

It was always a struggle. In 1994, because he had used all his vacation time going door-to-door, Dant wrote letters to 90 golf companies.

"All 'no's,' " he says. "I was about to give up."

Worn out, dispirited, Dant came home from work one evening and on his porch he saw some boxes. "They were Tommy Armour irons and 288 sleeves of Wilson Staff balls," he says.

"It was a sign. It was stunning. It said, 'Do not give up.' "

Soon he heard about work done by a California scientist, Emil Kakkis, a Ph.D. in biological chemistry with post-doctoral training in genetics. "Dr. Kakkis had found a way to make the enzyme that's missing in MPS children," Dant says. "But he was running out of money. He was two months from closing his lab."

Life's moments are rich with coincidence so wonderful as to seem ordered up. How else do we explain the intersecting lives of Emil Kakkis, Mark Dant and Barney Adams? Consider . . .

Just when he needed big money quickly, Dant again turned to the boss of Adams Golf--only by then Barney Adams was no small-timer. He'd become a golf industry sensation by creating and marketing Tight Lies fairway woods. And he was eager to help Ryan.

"I asked Mark how much it would take to accelerate the research process," Adams says. With the figure $200,000 in hand, Adams called a friend, Tom Fazio, the golf course architect. "I told him Ryan's story and said, 'I need X dollars from you to help me underwrite this.' "

That day, right then, Fazio wrote a check. "I had a big lump in my throat," Fazio says. "I have six kids myself, and I thought, 'What would I do if a doctor told me what that doctor told Mark Dant?' "

Without the Adams/Fazio contribution, Dr. Kakkis' research likely would have ended. Instead, as Kakkis' work gained greater notice, the biotechnology company BioMarin Pharmaceutical gave him $5 million, in hopes of bringing a treatment to market.

"Not to be melodramatic about it," Mark Dant says, "but if not for Mr. Adams, Mr. Fazio and the entire golf industry, my son would be deceased. Golf's a game, I know that. But golf has given my family life."

On Feb. 13, 1998, Ryan Dant was the third of 10 MPS children to receive Dr. Kakkis' enzyme-replacement treatment. A week later, standing in front of a mirror, his shirt pulled up, Ryan shouted, "Wow! Mom, Dad! Look how much smaller it is." His stomach was no longer grossly swollen.

Three years of four-hour weekly infusions haven't cured Ryan; what they have done is give him his body back. With the treatment, he has grown 511/42 inches, gained 35 pounds, and is again an athlete. He spent a week in June participating in a baseball camp.

"We're halfway now, and it's been a miracle," Mark Dant says. "But what the doctors tell us now is that what's happened to the body also has happened to the brain. There's the possibility of mental regression. The next step has to be gene-replacement therapy."

Barney Adams is aboard. "They say the gene-replacement research will cost $2 million. I told Mark, 'OK, let's do it again.' I've never talked about my company's involvement, nor has Tom Fazio talked about his, but now we have this ulterior motive. We want to raise $2 million for Ryan Dant."

On Feb. 13, 2001, the third anniversary of his first enzyme treatment, Ryan Dant went into his backyard with a new Tight Lies 5-wood that bore his name on its sole plate.

He teed up a ball, took a look at the creek way out there, took a look at the tennis courts way farther out there, and he whaled away.

The ball bounced off the tennis court fence.

"Wow, it really went," Ryan says.

Did he hit another?

"No, sir. I took my club to my room. I want to save that power."

For more information or to make contributions, phone 214-632-RYAN or see ryanfoundation.org.

COPYRIGHT 2001 New York Times Company Magazine Group, Inc.
COPYRIGHT 2001 Gale Group