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Approaching the holidays, marathon runner Anthony Piatek remembers his mother

Anthony Piatek greets his late mother Mary Jo Piatek near finish line 2012 Chicago Marathon.

Anthony Piatek greets his late mother, Mary Jo Piatek, near the finish line at the 2012 Chicago Marathon.

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Updated: December 17, 2013 3:28PM

Now that it’s nearly winter in Chicago, many of us are layering up, donning hats and gloves, and collectively complaining about the cold, the snow and the piercing wind. It’s a Chicago tradition, and I believe that esprit de corps helps us face that long road toward spring. This camaraderie also contributes to the city’s reputation for giving — it’s always easier to give when those around us are doing the same. Giving during the holiday season also helps ease the pain of missing loved ones we’ve lost, particularly in the past year.

Last April, my mother, Mary Jo, passed away due to complications related to pulmonary hypertension. She was only 54 and a true bright light in my life. Pulmonary hypertension occurs when there is high blood pressure in the lungs. Unfortunately, no cure has been found, but research is ongoing.

Although it’s been five months, her absence is especially challenging during the holiday season. Yet as I reach those unenviable milestones — first Christmas and New Year’s without her — I am comforted by the support my family and I continue to receive. For example, the Midwest Chapter of the Pulmonary Hypertension Association (PHA-Midwest) maintains a warm and steady connection with my family and me. The group cheered me on as I ran the 2013 Chicago Marathon in my mother’s honor.

But perhaps even more important—and something for which I will always be grateful—is the way PHA-Midwest stood by and supported my mother. She was part of a PH support group and found great comfort being with others who also shared her illness.

We believe my mother was initially misdiagnosed because the disease is so rare and not well known. Often, PH isn’t detected in a routine physical exam in adults and children. Its symptoms can be misdiagnosed as asthma, lack of physical fitness, or COPD, among other things, even in its more advanced stages. And as anyone who’s experienced the effects of a rare disease will tell you, the misinformation and lack of data are both dispiriting and frightening. But PHA-Midwest offered my mother — and all of us, really — a lifeline. The PHA website is filled with information about PH regarding the particulars of the disease, doctor locations, treatments, support groups, and also caregiver support.

Like many others, if she’d been treated earlier, my mother might have lived a longer life. She might have even been waiting for me at the finish line last October. But focusing on the past isn’t necessarily the most productive strategy. That I can inspire others to learn more about the disease actually lessens the hurt of loss, at least some of the time.

This month, I will be participating in the group’s “Points of Light” year-end appeal. For every light I can count — like the lamps in my apartment and the birthday candles on a friend’s cake — I’ll be giving PHA-Midwest one dollar for each. And, for now, while no flame can burn as bright as my mother’s, I’m committed to doing what I can to illuminate the good work that the PHA-Midwest continues to do on behalf of so many families.

Visit to find out how you can participate in the Points of Light appeal or support PHA-Midwest.

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