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Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy

When John and Aileen Crowley learned that their two youngest children had a rare and little understood genetic disorder, they didn't hope for miracles: they made them happen. In 1998, 15-month-old... This description may be from another edition of this product.

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5 ratings

You will read about love, faith, determination and what holds a family together when their world has

First Aileen and John were told about little fifteen-month-old Megan and then were prompted to seek testing for seven-day-old Patrick. It was 1998 and their beautiful family was complete with the addition of a new baby. Nothing was wrong with their oldest son, John, so a stunning diagnosis shocked them into action. Pompe disease was a rare and fatal diagnosis, a rogue disease with no cure. No nothing. Patrick would be added to the list of those few unfortunates who had Pompe. The disease began to ravage their bodies and someone had to do something about it and that someone was their father. In the Crowley family, one of the most important assets was their faith in God and the second was determination. It was going to be a race against time and they believed in possibilities and the medical community. John and Aileen were not going to let their children die a slow death. They were going to have to raise money for clinical trials that would research "experimental enzyme replacement therapy." Their marital vows would be stretched to the max and sacrifices would have to be made. John was going to leave his job at Bristol-Myers Squibb. He later claimed, "I was leaving to begin work on what would become the treatment that saved my kids' lives." (P. 95). It was a race, a race for not only the Crowley Children, but for all children who suffer from rogue diseases. How was he going to do what no one had done before? In this book you will find out what motivates a man beyond the norm. You'll read about what challenges they faced, their dark moments, and their joys. Snippets of the personalities of all three children will leap out at you from these pages. You'll empathize with a man who has to tell his seriously ill daughter, "Okay, Princess, if you want to fight, we'll fight too." (P. 45) You'll travel with the family as they fought their way from darkness into light trying to conquer a disease that would ravish the body, while leaving a child's faculties untouched. You will read about love, faith, determination and what holds a family together when their world has fallen apart. Before I read this book I knew nothing about Pompe disease, let alone anything about the Crowley family or the movie, "Extraordinary Measures." There is, as John Crowley so aptly said, there is a "gap between our real lives and the glamour of a Hollywood movie." At first I thought the sequential order of the book was a tad off kilter as the introduction, written by Aileen, was a summation of their lives, however the more I read, the more entranced I became. It was as if John were sitting in the room with me, telling me the story of his family. The story does not have the "gloss" of many books we've all read, but rather has a wonderful conversational style that cuts through what the gloss cannot. The tenacity of one man can make and has made a huge difference in not only his family's life, but that of others. This is one big time inspirational book that m

Must Read

One of the best books I have read in a long time. You will laugh and cry as you turn the pages of this heart warming story about an extraordinary family who try to give their children an ordinary life.

Inspirational

Inspirational book that took me through a roller coaster of emotions ... hilariously funny, tense, poignant, and thoughtful. John Crowley writes with such transparency about marriage, fatherhood, and family. Megan, the 4th grader confined to a wheelchair and on a ventilator, has such great wit and wisdom - a real inspiration to "able-bodied" kids. Great read for families, Fathers, business people, Moms ... and, yes, kids.

Wonderful and moving book

I picked this book up a few days ago and I thought it was wonderful. I heard about this family on TV and was curious, and I'm so glad I read this book. It was funnier than I expected, since it is about a serious topic, and has interesting lessons about parenting in general. I was very moved by the story and I will be giving this book as a gift to several of my friends.

Chasing Miracles is a great book!

John and Aileen have crafted a wonderful story of hope that is both heartwarming and full of inspiration. His family has faced ordeals that most people could never imagine. I took away many life lessons from this book and found myself in tears during various parts of the book as I learned about Megan's and Patrick's fight for survival. The book is written in a conversational way that makes it easy to read and full of emotion. John explores his roots, marriage, challenges against medicine and even a funny story about getting his street "paved" by the street department that made me laugh. Some other insights include John's research into future medicines, his thoughts about God and how he somehow remains sane against challenges that I can't imagine, even though I've been through a lot in my life. TWO THUMBS UP!
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