Former jockey runs 400 laps around yard for Irish child with rare disease

Dan Donoher, a 1-year-old boy from Ireland, is battling Scoliosis and a rare neuromuscular disease called Spinal Muscular Atrophy Type 1. Photo from Do It For Dan GoFundMe page

CHARLOTTE — Kevin Tobin had been feeling stir crazy from being cooped up in his Charlotte home for weeks. He and his wife, Caitlin, tried to busy themselves around the house – they watched TV and got into new hobbies – but they were running out of ideas.

“For a while I thought, ‘There’s got to be something more we can do for a greater cause,’” Tobin said.

It wasn’t long before Tobin, a 34-year-old former jump jockey from Ireland, came across the Do It For Dan campaign. The GoFundMe aims to raise more than €2 million for a little boy from Ireland named Dan Donoher.

Dan turned 1 year old in March and has a rare genetic neuromuscular disease called Spinal Muscular Atrophy Type 1 and Scoliosis. According to the family’s GoFundMe page, the life expectancy of a child with SMA Type 1 is 18 to 24 months.

There’s a treatment in the U.S. called Zolgensma that could help Dan. It costs $2.1 million for a once-off infusion. As of April 21, the family had raised €1,223,480.

“My heart just leaped out of my chest,” Tobin said. “If I should do something at all, I should do it for something like this.”

Tobin moved to the U.S. from Ireland in 2011, and lived in Baltimore, Maryland, before moving to Charlotte in 2016. He used to work at the Queen’s Cup Steeplechase in Mineral Springs, but is now studying at Central Piedmont Community College to become a substance abuse counselor.

He reached out to Dan’s parents in Ireland and told them he wanted to run a marathon around his yard on April 24 to raise $5,000 for their son.

The idea was inspired by Captain Tom Moore, a former British Army officer known for his philanthropic work. Moore recently made headlines for raising millions for England’s Department of Health and Social Care by walking lengths of his yard before his 100th birthday.

Tobin started his own GoFundMe page called “Do it for Dan Marathon in the garden” to collect donations. As of April 21, he had raised $3,225.

The area around Tobin’s house is about 140 yards, meaning he will have to run 397 laps to equal a marathon. He said someone has already donated $50 for him to run three additional laps, bringing the total to 400 laps.

Tobin plans to film as much of the marathon as he can on April 24 to post on social media.

“I hope whatever I raise is over and above what they need,” he said. “I’m happy to do anything to draw attention to it.”

Want to help? Visit the “Do it for Dan Marathon in the garden” GoFundMe page at www.gofundme.com/f/jg4wpe-do-it-for-dan-marathon to donate. You can also follow Kevin Tobin on Facebook and Instagram @kev_tobo and on Twitter @kevtobin.