By CRISTINA JANNEY
Hays Post
Brody Kough of Victoria and Jon Dooley are on a year-long journey together.
Brody is a 10-year-old from Victoria who is fighting the daily challenges of living with Duchenne muscular dystrophy. Dooley, 35, has pledged to walk or run 7 miles every day for a year to raise money for Brody and his family and raise awareness about the deadly disease.
Brody wants to do the things all boys his age want to do. He wants to play outside with his brother and sister. And when he can, he wants to go fast.
But Brody faces a challenge most kids his age don't. He suffers from Duchenne muscular dystrophy, which is a progressive disease that affects the muscles. Most sufferers deteriorate slowly and only live into their early adulthood.
Brody can walk short distances, but within the last year, he has had to transition to using a wheelchair.
Dooley, like Brody, has a craving for adventure. Dooley is a member of a national endurance motorcycle group, the Mile Monsters. The group raises money for "Heroes" with muscular dystrophy.
When Dooley learned about Brody through his coworker at Midwest Energy, Nathan, Brody's step-dad, Dooley said he knew Mile Monsters could help Brody and his family.
The Mile Monsters were already looking to expand their mission into the Midwest, so adding Brody to their list of Heroes made sense.
Dooley has already earned a Mile Monsters 1,000-mile ride-in-24-hours certificate for a round-trip ride on his Honda Goldwing from Ohio to New Jersey, 1,300 miles in 22 hours.
But Dooley has two young daughters, 1 and a half and 3. He needed an adventure that would keep him closer to home.
Dooley and another Mile Monster in Texas, Brett Moore, are undertaking Mission 777, seven miles, seven days a week, for a year for seven boys with Duchenne, including Brody.
Dooley said the founder of Mile Monsters is not interested in giving every single kid in the world Duchenne muscular dystrophy $20. He wanted the non-profit to provide life-changing help for a few kids.
The organization has purchased disabled accessible vans, electric wheelchairs, lifts and ramps. Brody was gifted a trakchair and a side-by-side, so he can go off-road.
On a recent Hays Post visit with Brody, he took his trakchair out for a spin. He spun around the yard with his brother and sister, ran over rocks, casting huge smiles.
At the end of the visit, he asked Dooley if he could go for a ride on his motorcycle.
"Like I was going to say no," Dooley said as he waited for Brody to gear up in his helmet and shades."
'Do you think I will make it to 18?'
That day was fun, but it doesn't erase the challenges the Mile Monster Heroes face every day, Dooley said.
"We had a tough conversation at his mom and step-dad's wedding this summer," Dooley said. "He was kind of over the day. His family caters to him because they want to make sure he is taken care of. He just wanted to be with Dooley outside."
When he's outside on Dooley's motorcycle on his side-by-side, Dooley said, "I think he feels pretty damn cool and pretty damn free."
"We were talking about Turbo, our oldest Mile Monster Hero, who was turning 18 this last year. Eighteen is starting to get up there in age for kids who have Duchenne," Dooley said. "The oldest living person is somewhere in their 30s. With Duchenne, other things can creep in and cause problems. Maybe 25, and he might not be going much farther than that.
"[Brody] said, 'Do you think I will make it to 18?'"
"That's not something, at the time, a 9-year-old kid should be worried about," Dooley said. "But that is what these kids face every single day."
He added, "His side-by-side, if that's what it takes for him to forget about Duchenne for an hour or 30 minutes, however long the battery lasts, to be a kid and live his best life."
When Brody first got his trakchair, he tried it out at level 1, but he was quickly asking Dooley to crank it up to level 5, and zoom, off he went.
Dooley said that a day after he helped set up the trakchair, he received a picture of Brody, rolled over, in the yard. He wasn't hurt. He was having fun.
"I guarantee you in that moment he's not caring about Duchenne. He is literally living his bet life," Dooley said.
"When I was 9 year old, I never once thought about death," he said. "I'm 35 and I don't think about dying very often. I don't have to be depressed like that. I am very blessed and lucky to be able to do what I can do. I am trying to use those gifts to help these boys live a better life, because tomorrow is not promised."
Thankful tears
Kyleigh Kuhn, Brody's mom, was brought to tears talking about the Mile Monsters. She said the group has been a support system, which the family didn't have.
"It's helped Brody be more confident," she said. "It has helped explain to kids what he has ... why he is the size of an 8-year-old, and why he can't do a lot of things."
She said it helped her to have other Hero moms she could communicate with, especially during Brody's transition from walking to using a wheelchair.
Brody can't do stairs. Eventually, he won't be able to walk at all, Kyleigh said. Brody has to wear hand and foot splints at night to improve flexibility.
Kyleigh said Brody can't play flag football or soccer like his peers, but the trakchair and side-by-side give him independence.
"He can just do his own thing, and that means the world to us," Kyleigh said through tears. "It's something just for him that he can do. He doesn't feel like he is weighed down or that he can't do things."
Kyleigh said Jon and Brett are fighting every day like her son and the other Heroes.
"I think more people need to see they're pushing through all the weather, and they're getting to see what the heroes go through because even on the hard days, they can't give up," she said.
"I am glad they are raising awareness. Duchenne muscular dystrophy has no cure, and it's fatal. You never know if they are going to wake up the next day or if you are going to have them until they are 18 or longer," Kyleigh said.
She said the Mile Monsters' donations have allowed their family to focus on Brody's medical needs. The Monster's next project for the family will be extending their drive for a wheelchair ramp.
"I am very thankful to the Mile Monsters, and especially Jon Dooley," she said.
Trading tennis shoes for snow boots
As Dooley adds more miles to his tracker, he admits he will be climbing while Brody descends.
Dooley started off just walking the seven miles. He is now walking a mile and running a mile. He hopes to be able to run the whole seven miles by the end of the year.
Dooley works full-time and usually gets up at 4 a.m. to complete his seven miles before work so he can still spend time with his family in the evening. It's taking him an hour to hour and a half to complete his seven miles daily.
Hays hit two record lows on consecutive days in January reaching an overnight low of -15 degrees. On those bitterly cold days, Dooley said he switched out his tennis shoes for snow boots. Hays had snow on the ground for almost two weeks.
"[Brody] really inspires me and motivates me to want to do these things," he said.
Dooley said he hopes Mission 777 lifts the spirits of all the Heroes.
"I hope it inspires Brody to keep going. .... My biggest reason for doing Mission 777 is inspiring all of our Heroes to just keep going," he said. "Every single day for them gets harder, and it gets harder.
"In the period of one whole year that I'm going to be doing this, he's going to be constantly declining," Dooley said.
Brody was hospitalized earlier this year with the flu, something not uncommon for someone with his condition.
"When he is hospitalized, I hope he can look at my posts and say, 'Well, Dooley's still out there getting it done,' pray for himself to get better and continue to get better."
Brody attended the Mile Monster's annual event in Minnesota last year. Dooley said Brody was initially very shy, but eventually was able to talk in front of the group.
"The more he is growing with the organization, the more he is coming out of his shell," Dooley said. "He's opening up and being the kid I think he always wanted to be."
Although Dooley's two daughters are too young to fully understand what their dad is doing, he said he hopes Mission 777 will eventually inspire them as well.
"If there is anything I want my daughters to learn from all of what we're doing with Mile Monsters, it is that there are different people in the world. They have other abilities, and they are special people. Brody is just as smart, and he's just as happy as every kid. He's just as talented as every kid. His body is just not the same."
You can track Dooley and Moore's progress on the Mission 777 Facebook page. Dooley is also measuring his journey as a virtual walk across the U.S. from the Mile Monster's founder's home in New Jersey to the Monster's oldest Hero's home in southern California.
Dooley, as of Thursday, day 91 of his journey with Brody, had walked or run 792.93 miles.
How to help
In an effort to raise awareness of Mission 777 and more money for its heroes, Dooley is encouraging people to join him and Brody on their journey.
As a mission supporter, you can walk or run seven miles in 24 hours, or you can embark on a mini-mission and walk or run seven miles for seven consecutive days.
Mission 777 will have a wheel of winners for each person who completes the mission supporter challenge. In any given month, the name drawn will win $50. It will also have a wheel for the remainder of the year for those who complete the mini-mission challenge. Those participants will have a chance to win $500.
You can find a link to donate to Mission 777 on the project's website at m777challenge.com/donate/.
Venmo Donation Link: https://account.venmo.com/u/JonDooley1
Dooley's goal is to raise $7 per mile, which over 2,555 miles would equal $17,885.
All the money donated goes directly back to the seven boys who have Duchenne muscular dystrophy and their families.