Despite rare disease, college student’s future is bright

DALLAS — Ryan Dant is looking downfield with an optimism unthinkable in his childhood. College, a career in sports management — who knows?

At 24, the Brookhaven College student loves sports: the allure of the underdog, the high of victory, the notion that even after a loss there is always tomorrow.

“You may be disappointed,” Dant said, “but you just have to realize there’s more games.”

Hope. It wasn’t always there for Dant, whose life growing up has been a season of ups and downs, of joy and despair and, early on, a career seemingly cut short before it even had a chance to begin.

In 2011, he was rejected from a research trial that might reverse the memory loss he’d begun suffering as a result of mucopolysaccharidosis 1, or MPS1, the rare disease he’d battled since childhood.

But like a fourth-quarter drive to force a game into overtime, doctors and nurses at UT Southwestern Medical Center stepped in to take on his case, and things are looking up again.

When Dant was diagnosed at 3, MPS1 was then a rare, incurable disease. But he — and other kids like him — would find relief with the help of a dogged medical researcher and the grass-roots foundation set up by his own parents.

Ryan Foundation

The Carrollton, Texas-based Ryan Foundation funded the work of then-UCLA researcher Emil Kakkis to help reduce the effects of MPS1, a disorder whose patients lack an enzyme necessary to break down certain proteins.

Left untreated, those proteins — which normally bond tissues together but must be removed where unneeded — act like grease in the pipes, slowing everything down: Hands and feet curl, spinal columns narrow, organs are severely damaged. Eventually, cognitive abilities begin to deteriorate.

Before Kakkis — now president of biotech company Ultragenyx Pharmaceutical — developed the enzyme replacement drug called Aldurazyme, few kids with MPS1 lived past age 10.

The drug is now used in nearly 90 countries worldwide. Others like Dant are growing into adulthood. But because the drug cannot reach the brain through the bloodstream — a barrier serving as the body’s defense against infection — the one effect of MPS1 left unmet was its cognitive decline.

Throughout high school, community college and his current job as equipment manager for Southern Methodist University’s football team, Dant always knew what was in store.

By 2011, he had trouble focusing: He couldn’t read a book to its end, and on exam days, he’d find his mind a blank despite hours of cramming the day before.

“It was a sign, more than likely, of things to come,” said his father, Mark. “Something needed to be done.”

Then UCLA researchers found a way to inject Aldurazyme into the spinal column. All that remained was a multi-patient trial to gain approval of the Food and Drug Administration.

The Dants, who live in Carrollton, were ecstatic.

In July 2011, they and others funded by the Ryan Foundation traveled to California, where a dye was injected into the patients’ spinal columns to foretell the drug’s ability to reach the brain.

Another rejection

But Ryan’s disease had too badly narrowed his spine, and the buildup kept the dye from getting through.

The foundation-funded trial was too crucial to risk failure: Ryan was rejected. And given typical trial and approval time periods, it’d be years before he’d see any benefits, if at all.

For the Dants, it was like nearing the end zone for a touchdown, then fumbling on the goal line.

The news was devastating, reviving memories of the difficult early years of Ryan’s disease.

Ryan was diagnosed in September 1991, when he was 3. His parents — Mark, now assistant police chief in Carrollton, and Jeanne, who works for American Airlines — were crushed. Their only child wouldn’t be around for very long.

Mark Dant hunted down the latest research and anyone who could help, trying to raise money to fight a disease few could fathom or pronounce.

MPS1 is an “orphan” disease; only several hundred kids had it nationwide, meaning pharmaceutical companies saw little reason to invest in the cause.

Gumption found a way: Raffles and bake sales grew into golf tournaments and large contributions from donors touched by Ryan’s underdog story and his parents’ against-all-odds drive. The Ryan Foundation was born.

Condition worsened

Meanwhile, Ryan began to limp. His hands curled. The outlook was dim, and his life was a series of surgeries and medical procedures. His father spent nights lying next to Ryan’s bed.

The foundation amassed a lot of money but had nowhere to put it. Then Mark Dant found Kakkis, who was developing what would become Aldurazyme but had stopped for lack of funding.

At age 10, Ryan was among a small group of kids chosen for the drug’s initial trials. Five years passed; some kids didn’t survive the red tape.

But Ryan hung in there, his school day disrupted weekly for four-hour IV sessions at Children’s Medical Center Dallas.

It was during those times that he formed what would become an enduring friendship with nurse Sarah McNeil.

Gentle and empathetic, she helped the beleaguered boy deal with his fear of needles and frustration over endless medical tests; she brought him toys.

“She was like part of the family,” Mark Dant said.

Gradually, his condition improved; the drug seemed to work. With Aldurazyme approved, the Dants could do Ryan’s injections at home. Hospital visits were no longer necessary.

They bade McNeil farewell and continued on with refreshed lives.

At home on the field

To see Ryan in the SMU locker room or on the football field is to see him in his element.

He enjoys the camaraderie and spirited atmosphere, and in the weeks preceding college bowl season, he excitedly rattled off the contingencies on which the Mustangs’ bowl hopes rested.

Few would know that this upbeat, easygoing young man has survived a nearly fatal disease, though the effects of his experience are evident if you look closely: He is stocky, compact as a high school wrestler with husky shoulders and hands thick and slightly gnarled.

Ryan Dant’s hope is to transfer to the University of Louisville, where a scholarship offer awaits. But that would mean carrying a full class load.

Despite his successes, though, time proved to be a formidable opponent. As Dant headed into 2011, he sensed his mind slipping, unable to focus.

The night he was rejected from UCLA’s spinal-tap trial, a tearful Dant posted on Facebook:

“Things happen for a reason. Things you don’t think are possible happen and you’re shocked and upset. I’m going to continue to march in the direction I was.

“Nothing is going to stop me from fulfilling my dreams.”

Without realizing it, he had thrown a Hail Mary pass: In the years since she’d stopped seeing him, Sarah McNeil, his former nurse at Children’s, had taken time off from work to raise her kids.

She and Ryan had stayed in touch over the years, trading Christmas cards and playful college football barbs via social media. When McNeil saw his post, she responded right away:

“Everything OK? Text me.”

Dant didn’t know she’d begun working with UTSW neuro-oncologist Elizabeth Maher. As it turned out, treating brain tumors through spinal taps — the kind of treatment Dant’s situation demanded — was exactly what Maher did.

Maher agreed to handle Ryan’s case, hopeful that repeated injections would cut through his spinal buildup.

By doing so, she’d take on an experimental procedure for no pay and abide by UCLA’s protocol, meaning little credit for the results.

“There’s really nothing in it for her,” McNeil said. “The only reason is because it’s the right thing to do.”

So far, it would be safe to say that the injections have changed Ryan’s life. As hoped, his clogged spinal column has been cleared, confirmed by another dye test, or flow study, in September.

“That enzyme essentially Roto-Rootered through that obstruction,” McNeil said. “We saw the flow go from almost nothing to not being obstructed.”

Grades improved

In addition, more recent tests in Minnesota showed Dant’s scores improving. And last summer, he enjoyed a John Grisham book all the way through.

Ryan earned a B in biology and is seven classes away from his associate’s degree. Louisville now seems a reality.

“I used to be really happy with C’s,” he said. “Now I’m getting B’s and A’s, and I’m really excited about that. If I can get good grades in biology class, who knows what else I can do?”

He recently got his fifth spinal injection at UTSW’s Zale Lipshy building. A numbing agent was applied to his lower back, and he was wheeled into the hospital’s neuro-radiology suite, where he eased himself onto a platform under a large X-ray machine.

McNeil, sensing his anxiety, clutched his hand in her own as he lay on his belly, his T-shirt pulled up to expose the target area. “You doing OK?” she asked. He nodded yes.

Neuro-radiologist Edward Stehel Jr. guided a 22-gauge needle into Dant’s spine, drawing four vials of clear fluid before injecting the yellow Aldurazyme with a steady, gentle push of his gloved thumb.

McNeil distracted Dant with questions about his spring plans.

“All right,” Stehel said as he withdrew the needle. “That’s it. You are all set, man.”

Team manager

At SMU, Dant works with the running backs and offensive linemen, making sure they have the helmets and shoulder pads they need at practice and during games.

Last month, he and the squad headed onto the field to prepare for their upcoming appearance in the Sheraton Hawaii Bowl, where the team was an 11-point underdog against Fresno State.

Head coach June Jones walked on the field and playfully critiqued Dant’s work for a bystander.

“He made his first mistake yesterday in five years,” Jones said.

“I put the ball on the wrong hash mark,” Dant said.

Another coach playfully punched Dant on the arm as he passed. Dant grinned. He was lucky to be here and he knew it.

If his UTSW trial is successful, it could prove promising for other MPS1 kids with narrowed spinal columns.

“When I see him, I just think he’s an absolute miracle,” McNeil said. “To think about all the people coming behind him, how he’s going to make a difference in their lives.”

And not just through this trial, but through the foundation his family launched in the first place. All told, the Ryan Foundation has invested more than $3 million in the cause.

Smiles are more frequent for Ryan these days. He drives a shiny Mustang bought with his own money. He has a girlfriend.

And in subtle but important ways, there are indications of just how far he’s come.

“When’s your birthday?” he was recently asked. “How old will you be?”

He replied with the hard-won freedom of a guy who can now dread the wide-open frontier of age.

“Twenty-five,” he said, rolling his eyes. “Ugh.”