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    Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy
    Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy
    Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy
    Ebook203 pages2 hours

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

    By John Crowley and Aileen Crowley

    3.5/5

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    About this ebook

    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 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."

    LanguageEnglish
    PublisherHarperCollins
    Release dateJan 12, 2010
    ISBN9780061751899
    Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy
    Author

    John Crowley

    John Crowley lives in the hills of northern Massachusetts with his wife and twin daughters. He is the author of ten previous novels as well as the short fiction collection, Novelties & Souvenirs.

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    Reviews for Chasing Miracles

    3.5/5

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    • 1/5
      Head-shakingly bad.
    • 5/5
      "Too often students are being taught to read as if literature were some kind of ethics class or civics class--or worse, some kind of self-help manual. In fact, the important thing is the way the writer uses the language."Francine Prose's Reading Like a Writer guides us in how to get the most out of what we read. Each chapter focuses on a particular element of writing. Chapter 2, for example, covers "words":"Every page was once a blank page, just as every word that appears on it now was not always there, but instead reflects the final result of countless large and small deliberations. All the elements of good writing depend on the writer's skill in choosing one word instead of another."The next chapter covers "sentences":"....sentences like Woolf's or Kliest's, like butterflies gliding from flower to flower, or those quick uppercuts like Chandler's, sentences like a poke in the ribs, or the rapid-fire sentences of Stanley Elkin or Philip Roth. But there are also wonderful sentences that take the quickest, simplest, clearest route from point A to point B."Additional chapters analyze "paragraphs," "narration," "character," dialogue," "details," and "gesture." There's also a chapter devoted to Chekov.Prose uses examples from dozens of stories, novels, poetry or prose, from a myriad of writers, to illustrate her points. I was impressed by the depth of her observations--from what we can glean from a simple gesture the author notes, to choices about the length of the author's paragraphs. Her commentary shows just how much lies beneath and between the words an author uses. I'm embarrassed to admit how much would have eluded me as a reader of many of the samples without her guidance. I'm planning to emulate her in my future reading.This book is also sure to add to your TBR list from the many authors and works Prose discusses. At the very least, I'm planning to add the 13 volumes of Chekov's complete stories to my wish list.
    • 5/5
      This is a book where as soon as I got to the end I wanted to go straight back to the beginning again. It's no use borrowing it from the library and giving it back (says she who's done just that); this is a book that you need to own, to read and re-read over and over and over again, and to cover with pencil notes in the margin and copious underlining.This book is so good IT NEEDS CAPITAL SHOUTY LETTERS. It's a phenomenal read, whether you're a wannabe writer or simply an avid reader who's interested in learning more about what makes a great book great. Examining all aspects of writing from words to narration to dialogue and gestures, Prose ultimately concludes that there are no fixed rules to great writing, but very different, well-executed strategies and observances which we can learn best through quality reading.For example, we learn how Heinrich von Kleist used little or no physical descriptions of his characters in his writing, yet they leap vividly in our imagination. He defines his characters by their actions, whereas Jane Austen by contrast defines hers through their thinking. Two very different writing strategies, both extremely effective.I warn you that this book, should you choose to read it, will do your wish list no good at all. Many, many pieces of narrative from a wide variety of amazing authors are used to exemplify the various writing points being made, and they were all amazing. I was disappointed that I didn't get to read on to the next part of the story with all of them, and it was a fantastic introduction to many authors I hadn't heard of before, as well as other greats which I just haven't got to yet.If you write fiction, this book needs to be within grabbing distance for your next bout of writer's block.5 stars - meticulously researched and well explained, you'll read in a whole new way after reading this book.
    • 3/5
      Don't read this book the way I did -- cover to cover out of general interest. The structure of the chapters are all the same: topic is presented, briefly discussed, then many good examples by famous authors are presented, often through long quotations. As a reader, this was tedious.

      Instead, I think this book could be useful to a novice writer as a reference when they are struggling with a particular concept. In such situation, they can read the corresponding chapter to get some pointers and be exposed to a variety of strong examples. For a writer, this might be helpful.

      The author sets up her exposition as if she is going to share some very important guidelines for writers. Aside from the fact that she acknowledges (in the final chapters) that anytime she gives a Do or Don't to her students she finds an effective example to prove her wrong, she doesn't give guidelines. She gives examples. Take out the quotations from this book and you have an extended newspaper feature article. Boiled right down, her thesis is "read good writing" and proceeds to give you examples of what you should be reading. At least, she does organize the samples to say "this is a good example of ____." I wish she would have closed her examples better; they're almost all intro heavy and exit light (or non-existant). Articulating what specifically was so good about the passage was not a strength. Though perhaps that is her point -- you can't nail down what makes writing good. Yet she has a whole book trying to tell you what good writing is.

      In summary, this is a decent reference book for consultations as needed, but not a read-through kind of book.
    • 4/5
      Informative and relevant to serious writers.
    • 3/5
      Prose shows us all her favorite passages from a lifetime of good reading. It was a lovely trip and it took me places I would not have thought to go. I especially liked Prose's thoughts on writing, how good writing often breaks the conventional rules of good writing.
    • 4/5
      Read review on it in the NY Times.
      Good book and really interesting for writers, I'm not sure that it was that good for readers.
      I think that after this I will read a little more closely and see some of the methods
      mentioned in the book. There were several suggestions for books here that I will
      probably read.
    • 5/5
      A really really great book for anyone who writes for pleasure or profit. I really felt like the author spoke to me. I am keeping it on my reading shelf because I think I need to re-read it again and at a more clippy pace this time. If I were to offer one criticism of the book it would be that the author uses examples from books I have never heard about. She uses loads of famous books but some are a bit more obscure and that stopped me in my tracks at some times. I recommend reading the books she talks about, I think I would have gotten more enjoyment out of it if I had.
    • 4/5
      Francine Prose's book is a great guidebook for the literary tourist, a thorough and engaging reminder to actually look at the ways in which what you're reading has been constructed - to look at each word, sentence, and paragraph so as to understand what is and isn't said, what it tells you, and why. Along the way, she introduces you to countless authors you have and haven't heard of, giving you just enough of a taste that you want to read them all. (Well. I don't want to read Pynchon or Flaubert or Nabokov again, but I can see where you'd feel like you might.)She addresses, sort of obliquely, the question of whether writing workshops and classes are "worth it" and whether there are rules of construction that can be taught or imparted or imbibed, and comes to the conclusion that the rules are really more like guidelines, and that there as many good reasons to break the rules as to follow them.The examples in the text form the basis of a great reading list, and following the book is a list - containing some books from which Prose has taken examples, and others that she has not - which is also excellent. She has a definite taste for the old masters, and for Russian lit, but more importantly she has excellent taste in literature, and an excellent eye for how writers do what they do. I disagreed with some of her analyses, but I really enjoyed the book, and highly recommend it to readers and writers alike.
    • 5/5
      Most "how-to-write" books fall into one of two categories; either they are a textbook style list of writing exercises or the emphasize the creativity aspect and suggest things like dream journals. This book, thankfully, falls in neither category. Francine Prose uses this book to show and not tell us what good writing is. She divides the chapters into aspects of writing like sentences and paragraph breaks, but the real joy of this book are the fragments of novels liberally sprinkled through each chapter. From Scott Spencer to Gustave Flaubert and an especially liberal helping of Chekov, Prose gives example after example of what constitutes good writing.I found this book more inspiring and helpful than any other book on creative writing I've read since Stephen King's "On Writing".
    • 3/5
      more a memoir than a book on writingworth reading only after you "shared" the same readings that the author lists within a) an appendix b) the book itselfotherwise, it is just rambling and asking you to take for granted what the author decided to be relevant: a faith-based reading :)
    • 4/5
      It's certainly very beautifully written, and Prose has a lot of good advice and examples. Sometimes she gets tiresome, especially when she starts quoting extremely long passages or goes on and on about Chekhov. But other than that, she's pretty cool. And her advice IS good.
    • 4/5
      Normally I don't much care for "how to write better" books. I don't find them to be very useful; I think if you want to learn how to write better fiction you're better off reading a lot of very well-written novels. However I found Prose's book quite useful, because in addition to her giving advice on such things as dialogue, characters, etc., she includes many excerpts from very good novels and explains what the writer did right. Most of the books she quoted from I haven't read myself, and I found myself wanting to. Although Reading Like a Writer took me awhile to get through, I think it was worthwhile. It's one of the few "how to write better" books I can recommend wholeheartedly to amateur fiction writers.
    • 5/5
      I picked up this book because the book's title describes one of my life's goals: to write a book someday (hopefully). I still don't think I'm ready to reach that goal, but this book helped me to start reading books in a different light.Sometimes I think I am the world's worst reader of literature. I tend to read everything literally rather than think of any themes, metaphors or analogies. I enjoy reading for plot, characters, dialogue but skip over the construction of the writing, what the author is trying to say by how they construct their prose. Francine Prose's book tries to teach someone like me, to read between the lines, and to analyze what makes great writing, great.Prose argues that one does not need classes or "how-to" books to learn how to write. She advocates that the best lesson for writing is close reading the work of great writers. Reading like a Writer basically excerpts famous works, and then Prose discusses how each passage shows great technique to construct sentences, character, tone, narration, dialogue, gestures, etc. Prose even includes a chapter on Checkov to show how he "breaks" all the previous rules.As a result of my background, I sometimes found it tough to do the close reading. I am a fast reader and tend to race through books to "find out what happens next". But for once, I really took my time to go through the passages and I do think it's influenced how I read. I'll admit, I still don't understand some of the points Prose tries to make (especially the paragraph section), but I feel I'm closer to understanding than I was before. Maybe I'm just thanking my lucky stars that someone actually tried to explain close reading; all my English lit classes all the way into University never did (and I did well in them!)Reading like a Writer was a NYTimes Bestseller, and it's easy to see why. Prose has a love of books and the written language, and her writing is very accessible. The passages she chose were from a very diverse group of writers and she even includes a list of "Books to be Read Immediately" that I will try to make a must-read for me in the next few years. Definitely Recommended.
    • 4/5
      This is a wonderful book. Ms. Prose, an aptly named writer, writing/lit instructor and critic, shares some of her favorite passages from novels and stories to highlight techniques for using words, narrative, character, gesture etc. And she's not shy about her worship of Chekhov (guess I should read him). Very enjoyable to read, it provides great information without being the least bit pedantic or boring. She even provides a list of "Books to Be Read Immediately," from which many of the passages are taken. This is a woman who is truly in love with fiction. I'll be referring back to this often.
    • 4/5
      Good introduction to the subject and other unfamiliar authors.
    • 4/5
      I was enjoying this, but then I got stalled, not because it wasn't good (because I think it was quite good), but probably because it's not a library book and there's no time pressure to finish it. Also, there were so many great excerpts that I was adding books to my to-read shelf about every other page; I'm not reading fast enough for that level of growth in my TBR list.

      I'll come back to this book eventually and give it a full review. For now, I think after a year and three months, it's time to move this one from my currently-reading shelf.
    • 4/5
      Reading Like a Writer is a quite enjoyable read, chock full of good advice and even better examples. I appreciated Prose's distaste for universal rules and principles, and her "show don't tell" method of demonstrating what makes for good writing. All in all, this book just made me feel excited to read more, and made me feel equipped to appreciate what I read more deeply. So I guess it achieved its aim fairly well.I did wish, however, that Prose also included some examples of writing gone wrong, alongside her countless examples of writing done well. Admittedly, she is explicit about wanting to avoid this (saying that aspiring writers get enough negative criticism as it is in workshops), but it seemed to me that she could've made some of her points more effectively (or that I would've understood them better, at least) with the aid of some contrastive evidence.Still, this book is a stirring testament to what good writing can be and accomplish. (Plus, it's a goldmine of recommended reading.) Though probably not a book that every passionate reader need own, it is at least a book that every passionate should borrow and eventually read.
    • 4/5
      Blockbuster!Prose lives up to her name :-)Writers know that reading is critical to learning their art and craft---this book goes beyond proving it---soaring in the heavens of literature...
    • 3/5
      Every now and then, I pick up books like this just in case it contains some important insight that will make my remaining years of reading that much more enjoyable. This book rapidly convinced me that I should be reading books rather than reading books about books. I'm sure there are great insights to someone patient enough to read the book carefully. I'm also sure that if I was trying to become a writer, this book would provide more valuable instruction than many other books on writing -- I really like the philosophy of learning to write by turning to the masters.However, I gave up my dream of being a writer a long time ago, and the insight-to-page-count ratio wasn't high enough to make me want to keep reading this book as opposed to reading some fiction. So I'm back to fiction reading. Although as a result of this book, I'll try to read closer, I'll pay more attention to dialog (that was one of the more interesting chapters that I skimmed), and I'll likely add some works by Chekhov to my reading list.
    • 4/5
      I thought this book would be stuffy, but I really enjoyed it. After a slightly dull beginning, Francine Prose dives in and shares with us all these books I've never heard of: The Marquise of O by Heinrich von Kleist, Pedro Paramo by Juan Rulfo, A Ship Made of Paper by Scott Spencer, and others. She also analyzes various aspects of writing, such as plot, character, dialogue, and gesture, and provides examples from Chekhov of how every rule can be broken.Thus, the book functions in two ways: as a writing guide and a really great recommendation source.
    • 5/5
      I found this book in the Literary Criticism section of the bookstore. Yes, it belongs there: this is a book on how to read books. But this book also belongs in the writing section because this is a book on how to read books in order to improve your own writing. Francine Prose organizes this book as one might organize a how-to-write book, starting with a close look at word choice, then widening her focus in each succeeding chapter: sentences, paragraphs, narration, and so on. In each chapter, she draws on classic works of fiction to illustrate her point: examining the choice of individual adverbs with Katherine Mansfield's short stories, admiring a paragraph-long sentence by Virginia Woolf, noting how Chekhov's short stories always seemed to echo a point in a writing class she was teaching. Prose's love of good writing shines through this book and most readers will find it contagious, enjoying new insights into classical works even if they never feel like writing themselves.
    • 5/5
      Love it. It's one of the important texts for creative writers.
    • 3/5
      Prose is very good at connecting the big dots. That is, she does a good job at finding great examples of technique, character development, etc. That's where I really found some value in this book, it added some new titles to my "to be read" list that I'm very excited about. If you've ever taken Creative Writing 101 or Journalsim Reporting 101, Prose's concepts will be more of a review (but with GREAT examples) and not much else. But if you like good writing for writing's sake, then this book will whet your appetite for some of the more classic books you may not have read.
    • 5/5
      I really enjoyed this. Would be a good tool to expand discussion in book group.
    • 4/5
      Prose's only real advice (wisely) is to read slowly. Only then can we properly understand good literature. She seeds our efforts with a great many of superb writing.
    • 3/5
      This book is an oxymoron, a paradox for me - I like it and I hate it; what I like about it I hate and what I hate about it I like. My favourite chapters are the first chapter and the last two chapters. I enjoyed "Learning from Chekhov" the most.
    • 5/5
      What a wonderful book! Warm, passionate, whimsical and humane.I usually have a huge problem with writing books (that is, books about writing) - they don't often practise what they preach! The didactic and the lyrical don't always mix well. And, all right, sometimes they are just compilations of writing exercises that I am just too lazy to do :)I loved the no-nonsense sense of structure in this book, delineated by each chapter: word, sentence, paragraph... just simple and beautiful, the building blocks of literature. Gentle ways of analysing without dissecting.It's funny because although Prose has such a wide and varied knowledge of books, I don't feel woefully underread so much as I feel awfully hungry for more reading. Her wisdom and insight make me realise that I have just read certain some things at too young an age (like Chekhov), just out of the concrete stage, and now that I am older, that these authors are well worth a revisit. And I always mean to read Henry Green, the author whose novel I was to present a paper on, only to be reassigned to Pynchon's Gravity's Rainbow when Party Going was out of print. Blechhh!So while this book, more than anything, increased my passion for reading - it will be my companion the next time I walk into a library or a bookshop, and then woe betide my wallet - funnily enough, it hasn't really increased my appetite to write. It makes me want to consume, not produce, fiction, which is somewhat paradoxical. Maybe what it's missing is the hard word from the 'bums on seats' school of writing. Roald Dahl famously called it 'stamina'.
    • 3/5
      Really smart about reading and writing. Also lots of GREAT recommendations on books to read. Multiples times I'd read a lengthy excerpt that she quoted for illustration and would have to add that to my reading list, so impressed was I by just that short bit.
    • 3/5
      An interesting read that reminded me why I didn't pursue English Lit beyond A-level. A little bit like physics, whilst I'm capable, I don't particularly enjoy it. Unlike physics, I firmly believe that lit crit / appreciation is often subjective - Prose's examples did nothing to dissuade me of this. I'm not a huge fan of Literature with a capital L - I enjoy storytelling - and I do believe good writing can be found outside its hallowed halls. I would have enjoyed this book more without the whiff of snobbery (at one point a work is 'at risk' of appearing to be magical realism - how awful for it - rather than a Work of Art). And for my sins, I have no intention of reading Chekhov.However, Prose is an engaging writer and her passion for literature is infectious. Her basic points are sensible and well-made for readers seeking to get under the skin of their books and for writers aspiring to make their words work a little harder - even if, as she is at pains to point out in the closing chapter, great literature largely shows us that all rules are made to be broken as long as you're good enough to get away with it.

    Book preview

    Chasing Miracles - John Crowley

    INTRODUCTION

    I was just shy of eight years old when my dad died. In his obituary, the Englewood Chief of Police said that everyone loved my dad and that he was a cop’s cop and a Marine’s Marine. I remember his sense of humor and I remember him looking exactly like I look today. His dark Irish genes continue on.

    I was born April 7, 1967, in Englewood, New Jersey. My mom and dad had known each other for all of a year or so. Some friend had arranged for them to meet, and their first date was at a bar in Englewood called O’Prandy’s. They hit it off famously.

    My mother, Barbara, still likes to tell the story of the first time she took my dad home to meet her very Italian parents, Frank and Jeanette Valentino. My dad was excited because he loved Italian food. But my mother wasn’t quite sure how her parents would react to an Irish cop. They’d never had an Irish guy over to the house before, so instead of spaghetti with her legendary sausage sauce and wine, my grandmother served corned beef and cabbage and steak and potatoes, and actually had a six-pack of beer ready for him. My mom says he was never so disappointed.

    We lived in a little apartment in Tryon Gardens in Englewood, half a mile or so from St. Cecelia’s Church. I always remember it as this great big apartment complex, but when I go back today to reminisce, I see that it’s only a couple of modest courtyards surrounded by all these little garden apartments. But it was an incredibly warm, loving place to spend my childhood because Tryon Gardens was basically a Crowley and Valentino family compound. Think frontier settlement for Irish Catholic cops and Italian carpenters.

    My mother’s father, Grandpa Frank, was the superintendent, so he and my grandmother lived there for free and received a little stipend each month for maintaining the property and the apartments. My dad’s brother, Jim, also a cop in town, lived there with his wife, my Aunt Marie and their two kids, Jimmy and Laura, as did my mother’s sister, my Aunt Michele, and my dad’s only sister, Aunt Cappi, with her kids.

    So growing up, it was kind of neat to have all my cousins running around. We would only have to look out the window to wave to each other every day. My grandfather took care of a couple of other apartment buildings to make ends meet, including the ones that replaced the Palisades Amusement Park in Fort Lee. When I was little, he would take me on his maintenance calls all day long while my mom and dad worked. I wore my baseball cap, and he built me a little tool-box. He put a couple of small tools in there, but he’d always put a book or two and some snacks in there as well. Over the years, he’d put in fewer tools and more books. I’d want to do the carpentry with him, and he did teach me how to hammer nails and fix a few basic household items. But he saw that I wasn’t all that good at carpentry and, more important, he didn’t want me to work with my hands for a living.

    My grandfather had only a seventh-grade education and could barely read, but he drilled into me the importance of getting an education. My parents and my other grandparents pressed me to study hard, insisting that a solid academic education was the only way to get ahead. Nobody in my family had ever gone to college. Growing up, I don’t think I even knew anybody who had gone to college. But even as a boy, I knew I wanted to go.

    My mom more than anyone would remind me to study, work hard, and move forward in life. She dreamed of my attending the best college possible. For her, even the Ivy League wouldn’t be too far a stretch for her oldest son. And on the Crowley side, college was important but the Ivy League was less impressive than the dream of a Notre Dame degree with a Crowley name affixed prominently to it. The Irish would have it no other way. How great to have a kid in South Bend one day, they frequently mused.

    On my first day of kindergarten, my dad drove me to school in his police cruiser. When we arrived, I flicked on the lights and blew the siren. It was awesome.

    My dad’s mother, Catherine Crowley, died in Englewood Hospital right around then. They didn’t let kids in the room toward the end, so I’d wait outside while my dad visited with her. I remember looking through the window and seeing this very sweet lady about to die in her fifties from diabetic complications. My grandfather, John, who had spent his whole life working a very tough job in a rubber factory, retired after her death and would die himself the following year. Then my dad died six months later. In less than two years, in the Crowley family both parents and their eldest son had passed away.

    My dad died on January 12, 1975, on duty. A flaw in the exhaust of his police cruiser allowed carbon monoxide to seep into the car and he was poisoned accidentally. I had never been to a wake before. I saw my dad in the casket. He was wearing his crisp police uniform and had the Marine Corps honor guard flanking his casket at the front, in deference to his prior service with the Second Force Recon Unit of the Marines. There were hundreds of people there, and I remember overhearing two secretaries from the Police Department saying, Just awful, tragic, John was such a great guy, and so young, so young. My dad died three days after turning thirty-five. Overhearing these ladies at the wake, I remember thinking, "Hmm. Do they not know that he wasn’t all that young? He was over thirty-five. Ah, how our perspective about old age" changes as we advance through life.

    At the funeral, the huge area of worship at St. Cecelia’s was filled and people lined the streets outside. Even the news media were there. We sat up front, and I remember the priest talking directly to us during part of the Mass. My brother Joe was too young to go to the funeral, so the priest directed his remarks to me. He told me that God’s will is difficult to understand and that sometimes you have to grow up sooner than you thought. He said I’d have to step up and help out in ways I probably hadn’t expected. That was really the first time that I began to realize my dad was dead and wouldn’t be coming back.

    At the end of the ceremony, my mom decided not to take me to the gravesite. It was bitterly cold, and she also thought that the hole in the ground and the twenty-one-gun salute might prove a little too much for me. The last thing I remember from that day is my dad’s casket with the flag on top being placed into the hearse as I was being driven in the other direction.

    My dad had always been in control. He didn’t lose his cool. Even when his job as a police officer in our hometown presented problems. Even though he wasn’t a tall man, he seemed ten feet tall to me. Part of it was the way he carried himself, part of it was the uniform and the badge, but there was something else as well: a sense of purpose.

    Anyone who reads the names of the first responders murdered on September 11, 2001, can tell by the last names that an outsized share of those heroes were the Irish and Italian Catholics who are drawn to professions like firefighter and police officer. My dad believed that he had been put on this earth not as a random collection of atoms and cells and genes and chromosomes, but to protect his country and neighbors and family.

    Aileen and I met at a Halloween party. None of my friends from Bergen Catholic had any money, and we were excited to go to this giant house in Franklin Lakes because we figured the girls would have some dough. Cute Catholic school girls with money—it didn’t get any better than that. We went to the party in full costume. One friend was a hobo and another was a baby; I was dressed as a priest. Aileen was the only one not wearing a costume because she was way too cool. It was 1984, and she was wearing a pink polo oxford with the collar up and a plaid skirt and penny loafers with a shiny penny tucked in each one. And those piercing green eyes.

    About six weeks later there was that winter cotillion at Holy Angels—yes, the one to which she asked me out! I’d seen Aileen once or twice since the Halloween party, but we had still barely spoken. My friend Jordan asked me, Hey, you remember Aileen? She’s looking for a date to the winter formal. Tommy says she’s gonna call you and ask you. Sweet. But she called when I wasn’t home and my mother reported, Some girl ‘Eye-leen’ called you. I said, Oh no, it’s ‘A-leen.’ So I called her back and said, Hey, A-leen, it’s John Crowley. Aileen replied, Eyeleen. People to this day call her A-leen because of the way it’s spelled, the same way her grandmother spelled it.

    She began to say, Hey, there’s this dance… and I jumped in and said, I’d love to go. Our first kiss was a month later. It was January 1985, and we were watching the James Bond movie The Spy Who Loved Me on the Betamax in my basement. The movie ended and we just looked at each other and kissed on the couch. It was just a short, sweet little kiss. It wasn’t a big make-out session. It’s really hard to make out to Carly Simon singing Nobody Does it Better. A tad boastful, I thought. But it lit the fire.

    I attended the U.S. Naval Academy and largely put myself through Georgetown University, Notre Dame Law School, and Harvard Business School. Mom and Grandpa were right: education could open a whole new life for someone, no matter how modest their family roots. But sometimes life doesn’t unfold the way it’s supposed to. I was supposed to be an executive at a big corporation when I grew up. My beautiful wife, Aileen, was supposed to be a carefree mom. Our first child, John Jr., was born in December 1994. In 1998, our next two children were supposed to be dead.

    When we were told our two youngest children both had Pompe disease and had just months to live, we decided to survive their fatal diagnosis. We needed to beat nature and beat time. We needed to learn a lot about this disease in a hurry. And we needed to learn a lot about ourselves as well.

    Today, the Crowley home is a boisterous, happy place where wheelchairs zoom through the halls and our two Jack Russell dogs try to stay a step ahead of our three happy children. When one of the kids asks Aileen or me why our family isn’t exactly like some other family, our stock reply can be relied on: Well, that’s why they’re making a movie about our lives!

    The reality is that, for all that makes us unique, the Crowley family is exactly like every other family in America. We want what’s best for our children, our neighbors, and our future.

    The specific challenges our family faces may be rare. But the ways in which we’ve tackled them—the strategies and methods we’ve used to cope and to conquer and to live—have provided lessons that I hope will inspire any family.

    In 1998, when John Jr. was a little more than three years old, Megan and Patrick were diagnosed with Pompe disease, a rare and fatal neuromuscular disorder. We had never heard the word Pompe (pronounced pom-PAY) until that Friday, March 13th, when a neurologist in Oakland, California, told us that our fifteen-month-old Megan had the disease and that she would not live past her early childhood. And he told us that we needed to get our then seven-day-old Patrick tested as soon as possible because there was a 25 percent chance that he would have the disease as well, which was confirmed four months later. From that day in March, that word, that disease, would forever redefine our lives. It changed us before we could change it.

    Aileen and I are both recessive carriers of a gene that is involved in the production of an enzyme that breaks down sugar in the muscles stored as glycogen. People who don’t have Pompe produce this enzyme, and their glycogen is broken down and converted into energy for their muscles. Aileen and I, being silent carriers of this genetic defect, had no history of the disease in our families.

    In the span of about a day we went through the shock, grief, anger, and denial that come with such a diagnosis. But within the span of that same day, we together also reached one other emotion that would define our journey with Megan and Patrick: determination. We had no idea if we could change the course of their disease, but we didn’t want to look back years or decades from then and wish we had done something else, something more for them—and for all those who loved them.

    And so we reached out to every doctor and researcher around the world who knew anything about this horrible disease. We raised money from family and friends for nonprofit charities to drive science toward a cure for Pompe.

    As the kids’ disease slowly ravaged their bodies, we grew increasingly frustrated with the pace and direction of the research. And so we took a risk, a big risk. In March 2000, I left the security of my marketing job with a large pharmaceutical company and partnered with a researcher to start a tiny biotechnology company, Novazyme Pharmaceuticals, focused on developing a treatment for Pompe. Aileen devoted herself as the mother and all-encompassing caregiver of three children.

    What our fledgling start-up company lacked in money and experience, we made up for in passion, hard work, and commitment. We built that tiny biotech firm over an eighteen-month period into a 120-person business and sold it to Genzyme, one of the world’s largest biotech companies. As part of that larger company, after many twists and turns and the efforts of hundreds of people, we finally discovered and produced a medicine to treat Pompe disease. The kids got their special medicine on January 9, 2003. Megan was six years old and Patrick was four years old. The medicine saved their lives by reversing the life-threatening enlargement of their hearts. For a time, the medicine even greatly improved their muscle strength.

    Today, Megan and Patrick are in the seventh and sixth grades, respectively, at John Witherspoon public school in Princeton, New Jersey. Their special needs, older brother, John, is in the eighth grade there. Megan and Patrick are still profoundly affected by their Pompe disease—they will never walk and they remain on ventilators. But their hearts are fixed. They are alive, smart, and happy. I currently serve as President and CEO of Amicus Therapeutics, where I continue to work with some of the greatest physicians and researchers in the world to develop potentially newer and better medicines that can help Megan and Patrick and many others

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