The New York City Marathon took place this past weekend, and one Louisville runner laced up her shoes for a person and a cause that sits close to her heart.
Robert Vice, an 11-year-old from Louisville, carries a big personality and a gift for making people laugh. But behind that bright smile lies a journey most people would never imagine.
Robert lives with Morquio syndrome, a rare condition that affects how his body breaks down certain sugars. The disease has hit his bones especially hard, putting him through eight surgeries and forcing him to relearn how to walk from scratch.
“When I look at other people, how their bodies are working perfectly, and then I look at mine… knock knees, my ankles hurt. Like, I can’t stand up for, like, over 10 minutes without my ankles getting hurt…and yeah, it’s tough,” Robert said.
Every Wednesday, Robert sits through hours of infusion treatment to replace an enzyme his body simply cannot produce on its own. He has done it more than 400 times.
“It becomes fine, but not better,” he said.
The treatment manages some effects of Morquio, but it does nothing for bone growth.
“A disease that is treated with a once a week treatment, half a million dollars, and it doesn’t do any… the treatment doesn’t do anything for the primary effects. It’s not an effective treatment,” said Robert’s dad, Bobby Vice. “We just didn’t feel like with all the medical advancements that were being made in other areas that this was acceptable.”
That frustration pushed Robert’s parents, Bobby and Helen, to take matters into their own hands. They launched Rooting for Robert with one clear mission , find a cure.
In just five years, the nonprofit has raised nearly $5 million for research and brought Robert together with other children fighting the same battle.
“It’s really something else…it’s fun to be around, and then they get what I’m going through,” Robert said.
Standing by the family’s side throughout this entire journey has been close family friend Brittney Thompson. Last weekend, she ran the New York City Marathon in Robert’s honor.
“I knew I wanted to run, and I knew I wanted to run for a charity, and this one was just obvious for me,” Thompson said.
“It was so fun to watch. I was staring at this phone, just looking at the dot… tracking her on the app,” Robert said. “Yeah, it was fun.”
Brittney crossed the finish line and raised $10,000 in the process. For Robert and his parents, watching her run reminded them just how much support surrounds their family.
“To see Brittany do things like she did, you know, having never run a marathon and doing it, yes, for her own success, but really doing it to bring more visibility to Robert and Rooting for Robert, and then all of his friends that we’ve made across the world and the country with Morquio Syndrome, is just phenomenal,” said Robert’s mom, Helen Vice.
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