Customer Reviews

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

5 star:		(7)
4 star:		(1)
3 star:		(0)
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1 star:		(0)

 

 

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!

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.

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.

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.

I had seen the movie and it was truely mesmerizing. Couldn't take my eyes off of it. However the director must have been really good, because the book itself is a lttle dry and certainly not a page turner. It does validate the movie and that is what I really wanted. It gives resources for the various companies and biographies for specific researchers mentioned in the book, which is also what I wanted.

Like many books written by the scientific community, it provides facts, but doesn't paint a picture in your mind's eye. If you are interested in genetic diseses, or find the subject intriging, it is a good read.

Many people have no idea what markers are in their genetic code (like the Crowley's) and I believe it is a significant introduction into what may happen if a couple has no idea what their genetic markers mean and would prefer to make an informed, or un-informed decision.

A layman's intro into dominant and recessive genetic diseases and the financial and social ramifications of raising these children and providing for their future. It demostrates that an odinary family can witstand the pressures if they are willing and dedicated to work through the challenge and find suitable assistnce.

See the movie as well.

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 many will want to add to their lists, especially those parents of special needs children!

This book is extremely well written with first hand accounts of what challenges a family has faced raising 2 of 3 children with Pompe Disease. It is a quick read and does help to educate the general public about this disease. In addition, the movie with Harrison Ford, Extraordinary Measures, is available at most movie stores which was made specifically regarding this family and their determination to keep their children alive.

This is a great story and inspiring. Other similar stories of interest are a recent book called "The Phoenix Resolution", and, of course, similar stories like Lorenzo's oil.