Student overcomes illness

By Aaron Ortega

Opinion Editor

 

An enthusiastic nine-year- old boy, outfitted in a bright red University of Louisville basketball jersey, enjoys a rare opportunity. Sitting courtside on the visiting team’s bench during a college basketball game at Pauley Pavilion on the University of California, Los Angeles campus, Ryan Dant already knows he wants to someday attend U of L, despite his age.

To record this memorable day, the U of L Cardinals later surround a bright-eyed Ryan for a group photo taken by his father.

However, at the time, it was uncertain whether Ryan would live much longer than the age of 10. He was diagnosed at age three with the rare disease mucopolysaccharidosis 1, or MPS1, a disease that children failed to survive at the time of his diagnosis. In 1998, Ryan, along with a select few who were also diagnosed, was not at UCLA to attend a college basketball game. He was there to begin new drug trials that could possibly defeat the illness and offer him a chance of survival.

Now, as Ryan’s December graduation from Brookhaven College looms closer, his transfer to U of L is now a reality. He has an optimistic view of his future. He also groans at the mention of how long he’s attended Brookhaven College. “I’m not going to say that, because I’m so old,” he said.

In 1991, Ryan’s parents had dreams for their first child’s future: dreams that included playing the role of big brother for their future children, as well as entertaining the idea of celebrating future grandchildren. “All of that had been packed away in one conversation with a doctor at Children’s Medical Center,” said Ryan’s father Mark Dant, assistant police chief in Carrollton. “The most difficult part of preparing life for tomorrow was … knowing that you couldn’t think about tomorrow because tomorrow was only going to bring pain.”

Ryan’s disease, often referred to as an orphan disease because of its rarity, affects the body’s ability to produce necessary enzymes that break down certain proteins, which leads to the excessive storage of protein material in cells. The build-up eventually leads to severe damage of the body’s joints, bones and organs, as well as slowing down cognitive abilities.

At the time of Ryan’s diagnosis, little research and funding existed. But Ryan’s parents did not abandon hope.

In an effort to prepare for the uphill battle of raising funds for Ryan’s treatment, the Dants began hosting everything from bake sales to raffles and boxing tournaments. These fundraisers eventually led to bigger charity events, such as auctions, galas and golf events.

The fundraisers segued into what would become the Ryan Foundation. This fundraising group was largely responsible for footing the bill for research and drug trials that Ryan and others who were diagnosed underwent. The foundation continues to receive donations. “There’s no paid staff. It’s all volunteers and it’s run out of our kitchen,” Mark said.

During his drug trials in 1998, Ryan formed a friendship with nurse Sarah McNeil at Children’s Medical Center of Dallas, a friendship that would continue through the years. When Ryan was rejected from new drug trials at UCLA in 2011, it was McNeil who reached out to a neuro-oncologist specializing in spinal tap treatments of brain tumors, who would later agree to treat Ryan.

The treatment process involved multiple injections, which would eventually clear the spinal build-up that had been hindering Ryan’s recovery. The recovery would prove to be a second chance at living a normal life.

“Right now, I’m looking for a second job since SMU cut back our hours during off-season,” Ryan said. Working in his fifth season as equipment manager for the Southern Methodist University football team, Ryan enjoys being among the coaches and team.

“I’ve noticed I’ve been able to run a lot better, work out and stay active with the things that I do,” Ryan said. Since receiving his new treatment, Ryan seems like someone who has never battled a near-fatal disease.

“To me, it doesn’t even seem like there’s anything there, like a completely normal and healthy person,” Silvia Ramirez, Ryan’s girlfriend, said. “If he hadn’t even told me any of this from the beginning, I wouldn’t have known.”

Besides his physical recovery, Ryan has also shown cognitive improvement. Prior to his new treatments, Ryan could not finish a novel. He had difficulty following the plot twists of certain films. Ryan now reads regularly, studies and retains information for his classes as most college students do.

His goal to graduate from Brookhaven and continue with his education at U of L is now coming to fruition.

“Most people with Ryan’s illness don’t attend college because of difficulties of memorization,” Mark said.

He added that Ryan could not have pursued his U of L aspirations without taking his first step toward a college career at Brookhaven. “Brookhaven gave him the opportunity to learn that he has the ability to learn,” he said.

“It’s just really remarkable and inspiring to see how far we’ve come and see all the effects that have happened. Now world- wide, the medicine is approved in 89 countries,” Ryan said. With the help of funding from the Ryan Foundation, the new drug is now being used to treat other children from all over the world diagnosed with MPS1.

“Ryan’s always said if he can have anything, he’d be just like anybody else,” Mark said.