Child’s Play

Posted by on Jun 19, 2018 | No Comments

Proud mothers: Jano and Marilynn

We are good at recognizing the big moments- the monumental events that change the trajectory of life. It’s the small things- those subtle shifts in the atmosphere that barely register in our consciousness, they are the things that often elude us. More than 30 years ago, two boys, one 8 years old and the other 6, played a quiet game together in the home of the younger boy. Something happened that day, or maybe the next, that set in motion a series of events that continues to impact the world today.

I met the mother of those childhood playmates. Marilynn and Jano have been friends and neighbors for over 30 years. Their meeting in San Anselmo, CA was serendipitous. Neither of the women had roots in the area when their families purchased nearby homes within a month of each other.  The women were brought together by the friendship of their sons and the pair have traveled over 2000 miles to honor the unique contributions each of their sons have brought to the world.

Peter is the name of Jano’s son. He was the younger playmate of the two. The boy was determined and intelligent with a fantastic sense of humor. He was also born with Muscular Dystrophy, which was discovered when he was a toddler. Muscular Dystrophy (MD) is a genetic disease that progressively weakens muscles and causes a loss of muscle mass. In time, sufferers frequently require the use of a wheelchair and experience severe breathing and heart problems. The disease is incurable and often takes the afflicted by their mid-20s.

Michael is the name of Marilynn’s son. The older of the pair, he was whip smart and uncommonly responsible. Like his younger friend, he was also fiercely determined.  At 8 years old, he discovered what he wanted to do with this life: he wanted to cure MD. Tonight, he is being honored by the Medical College of Wisconsin’s Neuroscience Research Department for his efforts to find a cure for MD. Collaborating with an international group of researchers, the doctor and his team have made recent discoveries that may lead to a cure for this debilitating disease.

Wanting to know more about the boys, I encouraged the women to tell me about their sons.

Jano shared Peter’s love of adventure, and his need to be on the go, recalling the efforts of his father and sister to ensure Peter got to the top of a mountain or to the distant town to enjoy a concert. She shared photos of Peter, first as a tow-headed, apple-cheeked toddler whose eyes flashed with mischief, and later as youngster with a cheery smile in a wheelchair, and finally as a self-assured young man with his own sense of style. As he aged in the photo, the toll the disease was taking on his body became more pronounced, but what never changed was the sparkle of his spirit, which seemed to emanate from each of the snapshots his loving mother shared.

Peter died at age 24, but his impact lives on, in the hearts of those who knew and loved him, in the three babies who have been named “Peter” in his honor, and in the passion and inspiration still burning in his childhood friend.

Marilynn spoke of Mike’s impressive academic achievements. While in medical school his advisor observed he had “the hands of a surgeon,” a direction his father encouraged him to pursue, but he remained dedicated to his goal of working in medical research.  Peter died while Mike was in medical school. The loss devastated him, and made him more determined to do the work necessary to destroy the disease that took his friend. His hard work and focused drive to impact the lives of those afflicted with MD has resulted in numerous awards and distinctions. Most importantly, there is a realistic hope that among medical experts who have reviewed the results of Dr. Lawlor and his team’s work that they may have discovered a way to treat a now untreatable disease

What began as the everyday magic of two boys playing turned into an alchemy of the spirit that is now working to change the world. The impact both of these men continue to have on the world is immeasurable, and the final result of their time together is still to be determined.  What is certain is that each man forever changed the lives and hearts of these two women, who were brought together by their two intelligent and determined sons.

 

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