What do you think?
Rate this book
Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy – A Father's Memoir of Love, Determination, and the Race to Save Two Children from Pompe Disease
When John and Aileen Crowley learned that their two youngest children had a rare and little understood genetic disorder, they didn't hope for they made them happen.
In 1998, 15-month-old Megan and 4-month-old Patrick were diagnosed with Pompe disease, a rare and fatal neuromuscular disorder that affects only a few thousand children worldwide, usually leaving them with little to no muscle function, enlarged hearts, and severe difficulty breathing. The Crowleys were told to take their children home and "enjoy their short time together...there is nothing that can be done."
Raised in a blue-collar neighborhood in northern New Jersey, John Crowley, a recent Harvard MBA graduate working at Bristol-Myers Squibb, was just beginning to taste success in corporate America. But now he was absolutely determined to find a treatment to save his children's lives. Frustrated with the pace of Pompe research, Crowley walked away from the corporate world at the age of 31 to help co-found a start-up biotech company, focused exclusively on producing a lifesaving medicine.
In Chasing Miracles, John Crowley writes from his heart about how he and his wife set out to do "whatever it takes" against phenomenal odds to help Megan and Patrick first to survive, and then to thrive—and to keep their family, including oldest son John Jr., together and their marriage strong. He tells about learning to ask for help, about not losing faith, about coping with adversity, about the generosity and kindness of others, and, most importantly, about what it means to never, never quit.
As Aileen Crowley writes in her foreword, "This book is our family's attempt to share much of what we have learned, especially from our children, who have taught us more about life and love than we have ever taught them."
In 1998, 15-month-old Megan and 4-month-old Patrick were diagnosed with Pompe disease, a rare and fatal neuromuscular disorder that affects only a few thousand children worldwide, usually leaving them with little to no muscle function, enlarged hearts, and severe difficulty breathing. The Crowleys were told to take their children home and "enjoy their short time together...there is nothing that can be done."
Raised in a blue-collar neighborhood in northern New Jersey, John Crowley, a recent Harvard MBA graduate working at Bristol-Myers Squibb, was just beginning to taste success in corporate America. But now he was absolutely determined to find a treatment to save his children's lives. Frustrated with the pace of Pompe research, Crowley walked away from the corporate world at the age of 31 to help co-found a start-up biotech company, focused exclusively on producing a lifesaving medicine.
In Chasing Miracles, John Crowley writes from his heart about how he and his wife set out to do "whatever it takes" against phenomenal odds to help Megan and Patrick first to survive, and then to thrive—and to keep their family, including oldest son John Jr., together and their marriage strong. He tells about learning to ask for help, about not losing faith, about coping with adversity, about the generosity and kindness of others, and, most importantly, about what it means to never, never quit.
As Aileen Crowley writes in her foreword, "This book is our family's attempt to share much of what we have learned, especially from our children, who have taught us more about life and love than we have ever taught them."
- GenresNonfiction
226 pages, Kindle Edition
First published January 1, 2010
7 people are currently reading
89 people want to read
About the author
John F. Crowley
2 books1 followerJohn Francis Crowley was born on April 7 (1967) in the United States. He is a biotechnology executive and entrepreneur. He's also the chairman and CEO of Amicus Therapeutics.
Ratings & Reviews
Friends & Following
Create a free account to discover what your friends think of this book!
Community Reviews
Displaying 1 - 11 of 11 reviews
October 10, 2017
If you've seen the movie "Extraordinary Measures" with Brendan Fraser and Harrison Ford, you'll recognize the Crowley family's story. Two of the Crowley kids have Pompe disease, and John Crowley basically dedicated his life to finding a medicine that would help them.
This book is a collection of the family's experiences and challenges. It was a good read and I enjoyed the stories about their kids.
This book is a collection of the family's experiences and challenges. It was a good read and I enjoyed the stories about their kids.
January 9, 2014
Read this book at work during breaks for the last couple days. It is written by a father whose 2 youngest children are stricken with Pompe disease, a rare disease for which there was little treatment at the time, and neither was expected to live past 2 years old. Not willing to accept that fate, Mr. Crowley uses his business connections to generate funding for research into Pompe and other diseases that affect a proportionally small fraction of the population, and through this research, an enzyme therapy to treat one of the most life-threatening symptoms of Pompe, an enlarged heart, was developed and saved his children's lives.
By no means are the children cured, as they will be wheelchair-bound and need ventilators to breathe for their entire lives, but their minds are completely normal, and the family does its best to treat them as such. Of the two children with Pompe (their oldest child has ADHD, which the author actually suspects to be Asperger's syndrome or a combination of the two), their daughter Megan seems to get the most written about her. I suspect it is both because she is older and because her course of treatment has been bumpier than that of her younger brother. She has a very sharp personality that keeps her positive despite her many challenges and limitations. Her brother is generally quieter and weaker, so I imagine at the time the book was written, he was content to follow in his sister's shadow.
The book isn't so much a focus on the children's conditions as it is a testament to what a lot of faith and perseverance can do in today's society. When no solution was available to treat Pompe, Crowley worked at biotech firms to find one, and when that didn't suit him anymore, he moved on to become CEO of a startup biotech that devotes its efforts to the cures for rare diseases. His marriage is also a topic of discussion, as parenting 3 special needs children can take its toll, but they make sure to take some couple's time to make sure the relationship remains healthy. Another main topic of this book was that a movie, 'Extraordinary Measures', was made of the family's story and how surreal it was for the whole family to see their story play out in Hollywood with famous actors playing real people in their lives.
Upon finishing the book, I was curious how the family was doing, and was happy to find that Mr. Crowley keeps a Facebook page with the goings on. As is clear from the book, Crowley used his business connections to end up quite wealthy, and my brief search indicates he is a powerful figure in the political machine in the NY/NJ area. Both children are still living, and doing well from what I could see, more proof of the power of science and the need to continue the research into what makes the body do unusual things.
By no means are the children cured, as they will be wheelchair-bound and need ventilators to breathe for their entire lives, but their minds are completely normal, and the family does its best to treat them as such. Of the two children with Pompe (their oldest child has ADHD, which the author actually suspects to be Asperger's syndrome or a combination of the two), their daughter Megan seems to get the most written about her. I suspect it is both because she is older and because her course of treatment has been bumpier than that of her younger brother. She has a very sharp personality that keeps her positive despite her many challenges and limitations. Her brother is generally quieter and weaker, so I imagine at the time the book was written, he was content to follow in his sister's shadow.
The book isn't so much a focus on the children's conditions as it is a testament to what a lot of faith and perseverance can do in today's society. When no solution was available to treat Pompe, Crowley worked at biotech firms to find one, and when that didn't suit him anymore, he moved on to become CEO of a startup biotech that devotes its efforts to the cures for rare diseases. His marriage is also a topic of discussion, as parenting 3 special needs children can take its toll, but they make sure to take some couple's time to make sure the relationship remains healthy. Another main topic of this book was that a movie, 'Extraordinary Measures', was made of the family's story and how surreal it was for the whole family to see their story play out in Hollywood with famous actors playing real people in their lives.
Upon finishing the book, I was curious how the family was doing, and was happy to find that Mr. Crowley keeps a Facebook page with the goings on. As is clear from the book, Crowley used his business connections to end up quite wealthy, and my brief search indicates he is a powerful figure in the political machine in the NY/NJ area. Both children are still living, and doing well from what I could see, more proof of the power of science and the need to continue the research into what makes the body do unusual things.
February 1, 2015
** Books 37 - 2015 **
Buku ini untuk memenuhi New Author Reading Challenge 2015 dan Yuk Baca Buku Non Fiksi 2015
2,9 dari 5 bintang!
Buku ini memuat kisah seorang keluarga yang berjuang agar bisa menyembuhkan penyakit Pompe yang diderita oleh putra putrinya Megan dan Patrick. Jujur saya baru mengetahui ada penyakit bernama pompe yang ternyata adalah penyakit keturunan yang disebabkan adanya penumpukan pada glikogen pada hati, jantung, syaraf sehingga bisa mengganggu organ-organ tubuh seperti jantung, ginjal, hati dll hingga saat inipun obatnya belum ditemukan karena ini berhubungan dengan masalah enzim yang ada ditubuh..
cerita yang disampaikan sangat menarik tapi entahlah saya kurang menikmati terjemahan buku ini yang berupa bahasa indonesia yang kaku sehingg rasanya saya ingin cepat2 menyelesaikan buku ini.. >__<
Buku ini untuk memenuhi New Author Reading Challenge 2015 dan Yuk Baca Buku Non Fiksi 2015
2,9 dari 5 bintang!
Buku ini memuat kisah seorang keluarga yang berjuang agar bisa menyembuhkan penyakit Pompe yang diderita oleh putra putrinya Megan dan Patrick. Jujur saya baru mengetahui ada penyakit bernama pompe yang ternyata adalah penyakit keturunan yang disebabkan adanya penumpukan pada glikogen pada hati, jantung, syaraf sehingga bisa mengganggu organ-organ tubuh seperti jantung, ginjal, hati dll hingga saat inipun obatnya belum ditemukan karena ini berhubungan dengan masalah enzim yang ada ditubuh..
cerita yang disampaikan sangat menarik tapi entahlah saya kurang menikmati terjemahan buku ini yang berupa bahasa indonesia yang kaku sehingg rasanya saya ingin cepat2 menyelesaikan buku ini.. >__<
January 25, 2011
This book is about a family who has two children with Pompe disease and one with ADHD and the parents' determination about trying raise the quality of life for their children in numerous ways: developing medicine, 24 hour at home nurses, getting them into public education classrooms with a nurse in tow, getting out and about even though it's a logistical nightmare and taking classes even though they can't move themselves. The book is interesting, particularly because it's about a family that lives in Princeton so I can relate to the location but the reason I gave few stars is because the 2nd half of the book is very repetitive, and I don't like to feel like I'm wasting time re-reading what I've already read, and is more of a 'the people we know' book.
April 21, 2011
Excellent book - a tribute to a family who have children with special needs. The Crawley's not only were able to offer comfort & hope to children with Pompe's disease, but they educated the reading public to a relatively rare syndrome. Just because a small select group of children have this genetic disease does not mean the health community should not search for a medication or cure. Good for you Crawley's.
April 26, 2016
A Family's Journey Through Difficult Times
This amazing family's struggle to give their children a worthwhile life while facing the problems of a rare illness is an inspiration to many. We all can honor their strength and love as they share their days - both good and difficult - as they continue on this walk.
This amazing family's struggle to give their children a worthwhile life while facing the problems of a rare illness is an inspiration to many. We all can honor their strength and love as they share their days - both good and difficult - as they continue on this walk.
April 13, 2011
I read this book after I had seen the movie. Instead of re-writing the movie, this book was about the Crowley Family and memorable events that had happened to them (soem good, some not so good)but the thing I liked the most was the life lessons/messages this book contained. A very good book! :)
February 16, 2010
The true story of the family that the movie "Extraordinary Measures" is based on.
November 11, 2010
I forgot I read this book and to be honest I don't have a clue what it was about...thus the three stars, it obviously didn't stick with me.
February 9, 2011
Very interesting book, after watching the movie. I enjoyed both the movie and his book. I would also like to read "The Cure" which is another book about their family.
April 29, 2011
terlepas dari beberapa gagasan yang tidak terlalu saya setujui, buku ini cukup menginspirasi.
:D
:D
Displaying 1 - 11 of 11 reviews