Fishers man's marathon is for boy with Alzheimer's-like disease

When Dan Mudra takes his first step in the Indianapolis Monumental Marathon on Nov. 3, he won't be running for a personal record. He'll be running for a little boy who is in his own race against time.

Mudra, 45, lives in Fishers with his wife, Molly, and three children. He's been a runner for 25 years, treasuring the time it gives him to think and to pray.

That first Saturday in November, he'll be thinking about Carson Burroughs, an 8-year-old from St. Louis who has a degenerative, fatal brain disease called Sanfilippo syndrome, which affects 1 in 70,000 children.

Mudra and his family have known the Burroughs family for years. Jobs have led them to different cities, but they have remained close.

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So when Mudra found out about Carson's illness, he was devastated. The young boy, he said, "is a most incredible human spirit who is quietly carrying a tragic secret — a most terrible genetic trait."

Mudra is a scientist for Eli Lilly and Co., so he's done his research. The outlook is bleak. Without any available treatment or cure, Carson eventually will lose the ability to walk, talk, eat and think. As more brain cells die, he may experience sleeplessness, mental retardation, cardiac issues, seizures, dementia and finally death, likely before adulthood.

"It's the worst thing any parent could imagine," Mudra said. That's why for this marathon — his first in Indiana — he launched a website www.iRun4Carson.com and is seeking pledges from people around the country to support advances in research for the disease, sometimes referred to as “childhood Alzheimer’s."

Sara and Craig Burroughs do the best they can for their son, who attends special education classes and speaks at about a kindergarten level, but with less comprehension.

For the most part, Sara Burroughs said in a phone interview, Carson "is a pretty happy boy." But each day, she and her husband wake up and wonder if this is going to be the day that their son's projected rapid decline will begin. Speech will be the first to go.

Meanwhile, all they can do is wait. Carson has not been eligible for any clinical trials at this point, but what Mudra is doing — raising money for the Cure Sanfilippo Foundation — gives them hope.

"We feel very blessed to have Dan and his family in our lives," Sara Burroughs said. "We just want to give Carson a chance at life." 

For Mudra, who said he felt helpless and hopeless when he first heard of Carson's diagnosis, the upcoming marathon represents 26.2 miles of fervent hope.

"Every time I lace my shoes, it is for Carson. Every time I feel a side stitch, a sore knee, strained Achilles or a leg cramp, I know it is nothing compared to what Carson and all the kids with Sanfilippo battle every single day," he said.

"How can I not pay it forward to help friends in need, and a little boy in a race for his life?"

Mudra's dedication is touching other lives, too. 

Particularly, John and Lindsay Merrick, and their little girl, Caroline. The Zionsville couple, who became aware of Mudra's efforts through the Cure Sanfilippo Foundation, received the devastating diagnosis in 2017, a week after their daughter turned 2.

"To find out that Caroline would be taken away from us in the cruelest way was unbearably heartbreaking," John Merrick said in an email to IndyStar. "Our seemingly healthy, beautiful, fun-loving and sweet 2-year-old would slowly lose brain and body function.  And there wasn't anything we could do about it — no treatment, and no cure."

There have been encouraging results in the areas of gene therapy and enzyme replacement therapy that warrant further research, Merrick said, but more money is needed for research.

"We are forever grateful to people like Dan who help carry the banner for us and others that are impacted by Sanfilippo."

Follow Maureen Gilmer on Facebook and Twitter: @MaureenCGilmer.