Dysautonomia Foundation, Inc. Chicago Marathon for FD
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Dee Dee Gealer:
I discovered the joys of running about three years ago after I had my third child. Working as a full time nurse and mother of three, running was the easiest form of exercise to incorporate into my busy schedule. I run at 5:00 a.m. before my husband leaves for work as a paramedic. I treasure these early runs as they give me a chance to relax and plan for the busy day ahead. Running for my shape and sanity was a wonderful discovery. After watching a local 5k race before the Detroit Thanksgiving Day parade, I became interested in racing. My brother Jamie, who has been a runner for many years, got me interested in participating in running events. He began coaching me on a variety of running details, such as running techniques, schedules, diet, and injury prevention. Last year he convinced me to sign up for my first marathon. We chose the Chicago marathon on October 9, 2005, which is coincidentally a very special day for me. Aside from being my first marathon, I also happen to be turning 40 that same day. I couldn't imagine anything else that would make me feel better about turning 40. That was until I saw my cousin Michelle Rappaport a couple months ago. Michelle is the adorable, spunky ten-year old grandniece of my in-laws (Bernie & Joanie). She was also born with familial dysautonomia (or FD), which affects the autonomic nervous system. FD is a hereditary disease found among people of Ashkenazi Jewish descent. Michelle is affected both physically and cognitively. Michelle has a difficult time swallowing, and receives most of her nutrition through a feeding tube. She also experiences problems with fluctuating blood pressure, temperature swings, diminished tear production, lung and hear problems along with a significantly reduced ability to feel pain and temperature. (She's fallen a few times so I've seen firsthand. I imagine it's scary when she's near stoves, hot irons, or on bitter cold days, etc.)
My husband David, the kids and & I hadn't seen Michelle or her family in a number of years and we were reacquainted with her & her younger sister, Jessica at a relative's bar mitzvah which we both attended. Michelle is a lovable little girl who is full of life. My three kids immediately hit it off with Michelle and her younger sister Jessica. They spent the entire time with each other. When we discovered they were from the Chicago area I mentioned to them that I was planning to run the Chicago marathon this year. It only took a brief moment to decide to run this race for Michelle and dysautonomia.
I realized how lucky I was to have the ability to run a marathon, age 40 or not. Michelle will never be able to experience the joy of running her first marathon on her 40th birthday. For this reason, I decided to run it for her. Even though she may not realize it, Michelle has given me an even bigger gift. She has given me the gift of appreciation, and to be thankful for what I have. Michelle's parents (Barrie & Rick) told me about all the good work that the Dysautonomia Foundation has done on behalf of the kids. Population screening is now available. They are in the process of bringing adding a prestigious new doctor in the next year especially for the older population (the good news is that patients are living longer). He is an internationally renowned researched to boot. Researchers are challenged of controlling this progressive disease as well as always looking for a cure. As I train for this marathon in the cold early Michigan mornings, I think of Michelle and thank God for what I have. On October 9, 2005, as I am running through the streets of Chicago, I will be celebrating the greatest gift of all. I have discovered the most genuine gift of life. Thank you Michelle. See you at the finish line. Love,
Dee Dee
(c) 2005 Dysautonomia Foundation |
