Thursday, September 28, 2017

Team Grace

The following post was written for this year's programs for the inaugural Montgomery County Invitational, "A Grace-Filled Tourney." It featured 16 teams playing at Hillsboro High School and Lincolnwood High School over two days.  We loved every minute, and are glad to induct some new members onto Team Grace.

When my wife Mary and I were expecting our first child in 2011, I had some of the same dreams that I think most fathers do. I wondered what sport Grace would be interested in once she got older. Would it be tennis like her mom or soccer, her daddy's favorite sport, or volleyball under the tutelage of Aunt Monica, who played at Marquette University. My family is so sports-centric that the thought that she wouldn't be interested in any of the above was fleeting at best.

After Grace was born, my thoughts on my little girl's sporting future continued. Sure I'm as athletic as a water buffalo on ice skates, but Grace would be different. She was born just weeks before David Freese carried our favorite team, the St. Louis Cardinals to their 11th World Series title in improbable fashion. The doctors continued to track her growth in the 80th to 90th percentile in height, taylor made for volleyball or basketball. We watched the United States men's and women's national soccer teams and the English Premier League any chance we could and even chased each other around the ottoman in our living room with a soccer ball once she was able to walk.

The latter memory comes with a caveat, one that would become the biggest part of my life. While Grace cruised on the furniture, getting from Point A to Point B as long as she had a hand on something, she never walked on her own. That was one of the things that set us down our journey to find out why and eventually led us to the crushing news that Grace had a degenerative neurological disorder called Infantile Neuroaxonal Dystrophy, or INAD. If you've never heard of INAD, you're in good company. There are only about 50 known cases worldwide and until a few years ago, there were no studies looking for a cure. The disease is characterized by loss of muscle function and the ability to walk or talk. It also carries a pretty grim prognosis, with most children with INAD not living past the age of ten.

Since we first learned about this rare disease, we have become somewhat "experts" on INAD, genetic testing and pretty much anything else that relates to our daughters health and future. There are now multiple studies that are looking for a cure or a treatment for INAD, including one at Washington University in St. Louis, all of which are funded by the families of children with INAD. We have met with Doctor Paul Kotzbauer, who is in charge of the Washington University study, and we consider ourselves blessed to have him in our corner. We know that someday, he will play a part in curing this horrific disease.

While INAD has robbed Grace of her ability to walk, it has not robbed her of her spirit, which shines through even in the hardest times. Over the last few years, she has provided our family and our community with countless reasons to smile and to find the joy in a world that can sometimes feel like it's collapsing in on itself. In return, our community has embraced our family in a way that is awe inspiring. From bake sales to penny wars to donation raffles to T-shirts, the people of Montgomery County and the surrounding communities have raised more than $130,000 for INAD research, with most of that money going to the study at Washington University. Even beyond the fundraising efforts has been the support that our family has received. We have tried our best to give Grace as many experiences as we can while we still have her, whether that is eight minutes, eight years or eight decades. Our local teams have helped make that a reality through Volley For Grace games, first pitches, honorary medals and even a ceremonial "slam dunk" once.

All of this has helped make my dream a reality. While Grace may not be in between the pipes for the 2035 United States Women's National Team or hammering down a kill for her mommy's 2030 Mizzou Tigers, she has inspired a set of champions, who will not only carry lessons of compassion and humanity on the court, but off it as well. The student athletes that have been with us on this journey are world changers. They are helping us find an answer to INAD, to make sure that no other family has to go through what we have with this terrible disease. They are Team Grace. Now you are too.


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