My Family Story

by BARBARA BAPTISTE

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   1999

The Crowley’s Journey

ImageMay of 1997 found me in Cambridge, Massachusetts on a beautifully sun-filled day.  It was 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 School.   John’s entire family—along with his wife, Aileen; 2½ year old son, John Jr.; and six month old daughter, Megan—listened as he began. . . .

“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.”

Ironically, it would not be long before his words—that may have rung through the crowd as idealistic rhetoric—would soon be challenged into practice. This, my oldest son John, was about to begin living the American dream (but not as I had envisioned on that day).

Sitting in awe and filled with pride, my mind wandered.  I couldn’t help but think back on the journey of our life, and feel sad that John’s father could not be with us to witness the day.   I remembered, as though it had been yesterday, that 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, four-year-old Joseph, the worst news any child could ever hear.  “Your father has been such a good police officer on earth, God has chosen him to patrol the streets of heaven.”   Their father would not be coming home—ever again.

However, this event in 1997 was a day of celebration.  After early-on adversity, always maintaining academic excellence (Georgetown School of Foreign Service Bachelor degree, Notre Dame Law School, and now a Harvard MBA), my son was about to begin on a well-deserved Yuppie journey (or so I thought).

Before the young family relocated to California with his new career, 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 waiting to hear the results of a muscle biopsy performed on their, then 15-month-old, daughter Megan.  It became apparent that it was not good news when a counselor was brought in to be present for a parent’s nightmare.  The doctor had said that they should 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 (NJ), holding our breath.  When the call finally came and I heard my usually composed son crying, I knew it had to be more than serious. The diagnosis was Pompe’s Disease, a rare genetic form of muscular dystrophy, a lysosomal, glycogen storage, type II disease.  The body is lacking sufficient amounts of one enzyme, Acid Maltase, which breaks down sugar in the cells.  Without it, all the muscles in the body deteriorate, including the major organs.  The neurologist’s report was not hopeful, at all.  He told them that—with the infantile form of the disease—there was little research (he was aware of) or hope for a cure.  This was not acceptable.

As I was a novice in cyber space at the time, my husband and, then 12-year-old, son Jason helped me 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 papers to California.  Within days, John was on a plane to North Carolina and Rotterdam.  He, his wife, and children (the oldest child, John Jr., is free of the disease) relocated back to the East Coast for needed family support.   A few months later, yet another blow was delivered.

Patrick was born at over nine pounds, quite hale and hardy.  During a visit for Megan at Duke University, with the new baby in tow, Dr. Chen suggested a simple blood test for Patrick to “rule out” any presence of the disease.  The doctor was shocked when it came back positive.  At two years old, Megan succumbed to the pneumonia virus that also afflicts Cystic Fibrosis children, RSV.  She crashed and was placed on a permanent ventilator.  By the time Patrick was one year old, he too was hospitalized with the dreaded virus and became ventilator dependent.

In January of 2003, after much strife, Megan and Patrick began the Enzyme Replacement Therapy, which they continue to have on a bi-monthly basis–at first, as an outpatient in a New Brunswick, NJ hospital, and now at home.  They do live with a feeding tube and are ventilator dependent.

A book was published, The Cure

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And, in 2010, a Movie released, Extraordinary Measures, starring Harrison Ford and Brendan Fraser, portraying my son John Crowley, which relays the trials and tribulations to overcome “Extraordinary” odds.

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Now, 17 years old, last December 2012, Megan had a spectacular Sweet 16 gala; Patrick turned sixteen this March 2014 (a gentle soul, he declined an extravaganza, instead preferred a day w/dad at the rifle range).

Last summer, 2013, Megan “chose” to endure major surgery (which ended up as three surgeries and six weeks in the hospital) to correct a serious curvature of her spine.  With hand-designed Victoria Secret nightgowns (she could not endure the ugly, regulation hospital attire), her fortitude and endurance was truly amazing, but Megan was determined–and, she succeeded!

Agonizing Choices for Lives Saved by Miracle Drugs by Geeta Anand

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Gutsy teen undergoes spine surgery

With accompanying private nurses, they both attend public school in Princeton, NJ, where Patrick has made many friends and excels; Megan is top of her class and is very popular.   Because of Aileen and John’s extraordinary fortitude, care, and patience these children with disabilities have thrived.  Their father’s gifts and success have allowed for his children to enjoy a wonderful quality of life.  Once again, my way of thinking (planning) had changed.  Destiny had its own plan for preparing my son’s journey in life . . .and I can proudly say that he stepped up to the plate.  “To whom much is given, much is required.”[1]

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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?” [2]    John F. Kennedy

[1] (Bible  Luke 12:48)

[2] Speech to Massachusetts State Legislature, Jan. 9, 1961

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 Picture:  Megan’s post surgery – Began school in September w/her class!

 

 

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