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STARTING POINT: What is your reason to go the extra mile?

Published: Monday, April 8, 2013 8:11 a.m. CDT

Everyone has a cause worth fighting for.

No matter the reason, or why, every human being will, at some point, feel the overwhelming passion to go whatever lengths necessary to capture the world’s attention for their cause.

For some, it might mean walking the ends of the earth to make us understand the point. For instance, Kendra Linder, the subject of last week’s Minooka-Channahon Life cover story, felt so strongly about saving unwanted dogs and cats from being euthanized, she walked 300 miles from Anna, Ill., to the PetCo store in Shorewood.

Channahon’s Village Administrator Joe Pena, who is featured in this week’s question-and-answer series, is driven in a similar fashion about the Law Enforcement Torch Run for Special Olympics Illinois, an effort in which he served as the statewide director until last year.

Pena has been involved with the program since 1984, and he even ran 32 miles one year to keep the effort on track. He was also instrumental in helping the Torch Run ramp up its fundraising from $450,000 a year to last year’s $2.97 million.

“I’ve said this many times over my career, other than being married to my wife and watching my children be born, this is probably one of the most inspiring and heart-warming projects I’ve ever been involved in,” Pena said. “To take care of more than 22,000 athletes here in the state of Illinois has just been a dream.”

When hearing Pena express his passion for the Torch Run, I could very much relate to how he feels. The only difference was the reason that motivates us.

For him, it was for the thousands of athletes who have various afflictions. For me, it is the rare disease that I have battled since birth.

Several years ago, I learned I suffered from a rare genetic disorder called Fabry Disease, a condition that some doctors refer to as “one you only read about in the textbooks.”

It is defined as “a rare, progressive, destructive and life-threatening genetic disorder that causes people to suffer a cascade of life-altering symptoms,” ranging from pain and the decreased ability to perspire, to lung disease, heart disease, kidney disease and other significant health issues.

The best way to explain Fabry Disease is to say it is a condition caused by a malfunctioning enzyme. This then leads to insufficient breakdown of lipids, allowing them to build up to a harmful level.

It is estimated that one in about 50,000 males suffer from Fabry Disease, and potentially twice as many females, although they are impacted with a random, more varied range of symptoms. The problem is, however, many people are often misdiagnosed until after irreversible organ damage occurs. To combat the effects of this disease, I receive every two weeks an IV infusion of a medicine called Fabrazyme, which basically injects this enzyme into my body. It is not a cure, but it is hopefully slowing down the harmful impacts.

It is, for obvious reasons, my cause.

Unfortunately, I’m not built to run or walk significant distances, like Linder and Pena, but I do have the ability to write. So, prompted by a request from the National Fabry Disease Foundation, I instead wrote to Governor Pat Quinn’s office asking them to proclaim April 2013 as Fabry Disease Awareness Month. Two weeks later, Quinn’s office granted the request.

Being a genetic condition, Fabry is a disease I share with several of my family members. And on March 29, my daughter came into the world as the newest face of Fabry. It is fitting, too, that she was born only days before April.

Now, this month, I can look down at my newborn daughter, knowing that our state is joining in a nationwide awareness effort to recognize our affliction. This was only a small contribution — my contribution — to the larger movement being made by the Fabry community to capture the world’s attention.

One brave soul, Courtnay Midkiff, is so determined that he is walking from Virginia Beach to California, going about 3 to 4 miles per hour, over a six-month period to spread the word about Fabry Disease. The walk in itself is incredible, but it’s magnified by the fact our disease causes pain in the hands and feet.

“Walking across the country is no small feat in itself, and living everyday life with Fabry is no easy feat, so just putting the two together is a little ridiculous,” Midkiff said during an interview with a Virginia television station.

It is the cause that fuels him, and his example that inspires us.

To learn about the National Fabry Disease Foundation, visit www.fabrydisease.org. To learn more about Midkiff, visit http://fabryswalkabout.tumblr.com/.

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