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Rare Disease Diagnosis Puts Life, Business in Perspective

 

Terry Marlin was employed by T&D Tool Services in Dickson for eight years before he bought the company in 2007. Most of his 12 employees have been there for 20 years or more, helping to produce long-life carbide and diamond tools that are used to create manufacturing components that serve the automotive industry.

 

Terry says that his tools are made to punch holes in things like aluminum heads and brake assemblies--the "parts that make the parts"--and his customers are all over the nation. 

 

The business is a dream come true, and one that was doing very well until the economy crashed in early 2009.  Sales were down 40 percent, and it was all he could do to avoid laying off employees. One of his largest customers had filed for bankruptcy.

 

While Jonah and Emory were the Marlins' initial motivation, there are 20,000 kids each year born with Duchenne Muscular Dystrophy.

Unfortunately, that wasn't the worst of it for Terry and his family back then. He was on a business trip in late December of 2008 when his wife, Sonya, called to let him know that his son, Jonah (now 8), had a genetic form of muscular dystrophy called Duchenne's. They were going to test the Marlins' other son, Emory (now 6), the next day, and Terry needed to get back home.

 

"It was a really tough time for us, in business and at home," Terry says. "Whereas at one point you'd worry about whether the kids would like their Christmas presents, here we were a week before the holiday getting diagnosed, and all we wanted to be together."

 

The rare disorder affects childrens' (mostly boys) ability to heal muscles, a degenerative condition that's typically diagnosed around the age of five, when it becomes obvious that they're not keeping up with their peers. Most are strong enough to walk to start, but are soon using a motorized wheelchair. Eventually, muscles like the heart are affected, and most succumb to the disease in their 20s.

 

The challenge was that Vanderbilt Children's Hospital didn't have any researchers dedicated to Duchenne's, and that it would take $500,000 to get a program started. In the middle of the economic whirlwind, Terry launched the Fighting Duchenne Foundation in April of 2010 to begin raising awareness and funding across the region.

 

Since then, they've raised nearly $250,000 toward their goal, enough for the folks at Vanderbilt to start cardiac research specific to DMD. Terry has become a sought-after speaker, and the fight has attracted the attention of artists, athletes and others who bring specific talents and reach to the effort.

 

In April, for instance, a celebrity basketball game brought out Tennessee Titans QBs Jake Locker and Rusty Smith, Sawyer Brown lead singer Mark Miller and actor Anson Mount. A motorcycle Poker Run is scheduled for June 15th, starting in White Bluff. Other events are held throughout the year, including a golf tournament in October.

Terry Marlin (right) with former Titan Blaine Bishop at a recent Fight DMD celebrity basketball game.

 

"The ironic thing is that we started to get some traction with Fight DMD about the time the economy started to turn around again," Terry says. "I probably wouldn't have been able to handle the business downturn, but since the diagnosis happened first, I was well equipped. Fate has a way of putting everything in perspective."

 

The automotive business is booming again, and Terry has moved T&D Tool Services to a new facility on four acres just outside the Dickson County Industrial Park. Things are looking up, both for DMD research and for the business.

 

As rare as the disease is--one in 3,000 to 5,000 boys is affected--there are five or six currently affected in Dickson County alone. Research costs $88 each minute, and the need for fundraising is a constant.

 

"My wife and I wanted to do more than just accept the diagnosis and live with the fact that our kids may not live to see their 30th birthday," Terry says. "When you have innocent children that are brought into the world and they are under your complete care to make sure they are safe in life, then they get diagnosed with a disease like DMD, you want to make it go away. The only way we can do that is find a cure."

 

For more information, or to get involved, visit www.fightdmd.com or email Marlin at terry@fightdmd.com

 
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