Though we prepare for our intended future, it is the unforeseen cause, usually from left field, that determines

the course one’s life will need to take. Does that mean we are at the mercy of the fates? No. The unforeseen can be prepared for. How? By “being the best you can be,” so that as life unfolds, you will be at the ready for the twists, turns, and challenges along the way. Granted, the paths are more difficult for some than others. “He gives the most to those He loves the most. He never gives us more than we can handle?” I have been witness to extraordinary, positive effects resulting from an unforeseen—seemingly hopeless—cause. May 1997, a beautiful, sun-filled day in Cambridge, Massachusetts, the perfect backdrop for the bright young man, John Crowley, to step up to the podium and deliver the Class Day speech at Harvard Business School1. John’s lovely wife, 2 ½ year old son, John Jr., six- monthold daughter Megan, and family members proudly listened to, what would come to be, prophetic words: “In time, we will all acquire a certain amount of responsibility and power. I encourage each of us to use that power wisely but use it often! Use it to fight racism, promote the entrepreneurial spirit, and fight disease of whatever kind.” This, my oldest son, was about to begin living the American dream—or so I thought. It would not be long before his words—that may’ve resounded through the crowd as rhetoric idealism—were to be challenged into practice. Sitting in the audience that day, filled with pride, my mind wandered. I couldn’t help but think back on the journey of our life, and the circumstances that began to strengthen John’s character and resolve. I remembered, as though it had been yesterday, the fateful morning in

January, 1975 when two little boys sat huddled together as I had to tell 7-year-old John, and his younger brother Joseph the worst news any child could ever hear. “Your father would not be coming home—ever again. He had been such a good police officer on earth, God had chosen him to help patrol the streets in heaven.” But, on a sunny day in 1997, as thunderous applause
1

http://www.alumni.hbs.edu/bulletin/1999/february/update.html

1

was heard at the end of his speech, I believed that after early-on adversity, always maintaining academic excellence, and many well-earned achievements, my son was about to embark on a good life, a well-deserved Yuppie journey. Little did I know! Before the young family relocated to California with his new job, John and his wife Aileen announced that they were expecting their third child in March. A few months later, one week after Patrick’s birth, John and Aileen anxiously sat in a neurologist’s office. Because of elevated enzyme levels, they were waiting to hear the results of a necessary muscle biopsy performed on their 14-month-old daughter Megan. It became apparent that it was not good news. A counselor was brought in to be present for a parents’ nightmare. The doctor had told them to go home and enjoy their daughter, she had no more than one year to live Meanwhile, we were many miles away in a different time zone, holding our breath. When the call finally came, and my usually-composed son was crying, I knew our worst fears might be realized. The diagnosis was Pompe’s Disease, a rare genetic form of muscular

dystrophy, a glycogen storage disease2. The body is lacking one enzyme, Acid Maltase3, which breaks down sugar in the cells. Without it, all the muscles in the body degenerate, including the major organs. The neurologist told them—with the infantile form of the disease—there was little research (he was aware of) or hope for a cure. This death sentence was not acceptable. Once again in his life, John would need to rise to meet an extraordinary challenge. In 1998, being a novice in cyber space, my then 12-year-old son Jason helped to traverse the Internet on a quest for hope. After hours of research, we found work being done at Duke University, NYU, Johns Hopkins, and in the Netherlands. That night we faxed reams of options to California.
2

Not surprisingly, within days John was on a plane to North Carolina and

GSD type II, lysosomal alpha-1,4-glucosidase deficiency http://www.agsdus.org/html/whatisglycogenstoragedisease.html
3

http://www.amda-pompe.org/

2

Rotterdam. Shortly thereafter, John, Aileen, and children (the oldest child, John Jr. is free of the disease) relocated back to the East Coast for the needed family support. 4 That April, yet another blow was delivered. Patrick, born at over nine pounds, was quite hale and hardy. Therefore, during a visit for Megan at Duke University, with the new baby in tow, Duke’s researcher, Dr. Chen, suggested a simple blood test for Patrick to “rule out” any presence of the disease. The doctor was shocked when the results were positive. With staggering unlikely odds, the dice of life had been tossed. Not one, but two of their three children had Pompe’s Disease. At two years old, Megan succumbed to the pneumonia virus that also afflicts Cystic Fibrosis children, RSV 5. A permanent ventilator was necessary. By the time Patrick was one year old, he too was hospitalized with the dreaded virus and became ventilator dependent. With a handful of people and nothing more than good intentions, we formed a Foundation, and met with doctors at NYU. By the following year, with the help of Bristol-Myers Squibb (my son’s new employer), we had a major fundraiser in Manhattan. Then, John met a research doctor from Oklahoma City, and began a company to develop the needed Enzyme Replacement Therapy. On our own, for the next three years and tireless work, we had notable fundraisers in Boston, New York City’s renown Tavern on The Green, enlisted contributors, and gained media attention; i.e., Wall Street Journal, magazines, newspapers, The Today Show, etc. The rare Pompe’s Disease was put on the map. With the challenge given, it would have been easy to pull the covers over our head (there were many days that sounded good) or we could find our mettle. The latter was chosen. It was done blindly because the alternative—doing nothing— was not an acceptable choice. Two years ago a book was published about John’s quest to save

4

http://www.youtube.com/crowleyfamily5 Respiratory Syncytial Virus http://www.dhpe.org/infect/rsv.html

5

3

his children, The Cure,6

The rights were bought by Harrison Ford to produce and star in the

movie, “Crowley”7 based on the book. Post Script: In January of 2003, after much strife, Megan and Patrick did receive the Enzyme Replacement Therapy. They continue to have infusions on a bi-monthly basis as outpatients in a New Brunswick, NJ hospital. They do live with a feeding tube and are ventilator dependent. Megan will be thirteen in December and Patrick will be twelve in March. With accompanying private nurses, they both attend public school in Princeton, NJ, where Megan is top of her class and is very popular. Their father’s gifts and success have allowed for his

children to have a wonderful quality of life. Destiny had its own plan for my son’s journey. He was well prepared, and he stepped up to the plate. “To whom much is given, much is required.”8
(Bible Luke 12:48)

The moment one definitely commits oneself, Then Providence moves too. All sorts of things occur to help That would never otherwise have occurred. A stream of events issues from the decision, Raising unforeseen incidents And meetings and Material assistance, Which no man could have dreamt Would have come his way. I have learned a deep respect for one of Goethe’s couplets: “What you can do, or dream you can, begin it. Boldness has genius, power and Magic in it.”
--The Scottish Himalayan Expedition (J.M. Dent)

6
7

The Cure: How a Father Raised $100 Million--And Bucked the Medical Establishment--In a Quest to Save His Children http://www.thecurebook.com/news/reviews/boston_globe.php

(Hardcover) by Geeta Anand

7 Harrison Ford is starring in CBS Films' drama Crowley

http://www.variety.com/article/VR1117987104.html?categoryid=13&cs=1
8

famously used by President John F. Kennedy: "For of those to whom much is given, much is required. And when at some future date the high court of history sits in judgment on each of us, recording whether in our brief span of service we fulfilled our responsibilities to the state, our success or failure, in whatever office we hold, will be measured by the answers to four questions: First, were we truly men of courage… Second, were we truly men of judgment… Third, were we truly men of integrity… Finally were we truly men of dedication?" Speech to Massachusetts State Legislature, Jan. 9, 1961

4