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That’s always a fun birthday for kids. It’s a trophy of sorts to be able to hold both hands open when someone asks them their age. But for Grace, it’s more than just a passage into the double digits: Grace Kenitz was never supposed to make it this far. In fact, many doctors and specialists hovered over her hospital bed just seven years ago and tried to convince her mother to do the unthinkable.
There was three-year-old Grace in a Wisconsin hospital, blind and bedridden, somber and scared, with feeding tubes and life support as the only measures sustaining her existence. She was responsive, always managing to rise above her rare mitochondrial disease and later, battle the odds when she was diagnosed with autism at age five. Grace would allow a faint smile at the sound of her mother’s voice, which gave her mother hope, even during the darkest days and longest hours. Shannon Kenitz would look at her baby in that hospital bed and clutch Grace’s hand a little harder as she did. There’s no way I’m going to do it, she thought to herself when the doctors recommended a cessation of life-prolonging measures. No way. There’s got to be an answer out there. There has to be another way.
Shannon didn’t know what that answer was, nor did she necessarily know where to find it. But what she did know was that Grace and her other daughter, Lily, meant the world to her. Shannon is a single mom, a breast-cancer survivor, and a working woman. And what that means is Shannon Kenitz is a fighter. So she did some research and learned of an emerging treatment called hyperbaric oxygen therapy. After Grace was taken to an out-of-state hyperbaric clinic, the OxyHealth Corporation in Santa Fe Springs, California, delivered a portable hyperbaric chamber to Shannon’s Madison, Wisconsin, home.
Within months, Grace was no longer blind. Months after that, the doctors removed her feeding tubes, and months after that, she emerged from her pink wheelchair for the first time and took her first steps. Those first steps were right into Shannon’s arms at the American Airlines terminal in Madison after her mother returned home from a business trip. Today, Grace can call out the word “Momma” and embrace her mother with the sort of fervor that only love can conjure.
As the grand-prize winner of American Way’s 2008 Road Warrior contest, Shannon regaled the other four finalists -- as well as our staff -- with Grace’s success story. We at AA are glad to know people like Shannon Kenitz, as well as all the other Road Warrior winners, each of whom had an amazing story in his or her own right. I invite you to read their entries at www.americanwaymag.com/entries.
Grace continues to be an inspiration for parents of children with special needs. Her story inspires hope, which encourages ingenuity, which in her case, ensures that she will be able to show people all of her fingers when they ask how old she is. And she is the muse for this column.
Happy 10th birthday, Grace. You have a beautiful life ahead of you.