Louisville woman runs marathon to raise awareness for 11-year-old with rare condition

LOUISVILLE, Ky. (WDRB+WAVE) — The New York City Marathon was this past weekend, and one Louisville runner did it for a person, and cause, very close to her heart.

Louisville 11-year-old Robert Vice has a big personality, and loves making people laugh. But talking to Robert, you might not guess everything he’s been through.

He has Morquio syndrome, a rare condition that affects how his body breaks down certain sugars. One of the biggest impacts has been on his bones; he’s had eight surgeries and had to relearn how to walk.

“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 spends hours getting an infusion to replace an enzyme his body doesn’t produce naturally. He’s done it more than 400 times.

“It becomes fine, but not better,” he said.

The treatment helps with some effects of Morquio, but not 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.”

So, Robert’s parents, Bobby and Helen, made it their mission to find a cure through Rooting for Robert.

In five years, the nonprofit has raised nearly $5 million for research, and connected Robert with other kids who have Morquio.

“It’s really something else...it’s fun to be around, and then they get what I’m going through,” said Robert.

By their side the whole time: 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,” said Thompson.

“It was so fun to watch. I was staring at this phone, just looking at the dot... tracking her on the app,” said Robert. “Yeah, it was fun.”

Brittney raised $10,000. For Robert and his parents, her running was a reminder of all the support they have.

“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.

For more information about Rooting for Robert, click here.