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The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son

3.86  ·  Rating Details ·  1,475 Ratings  ·  244 Reviews
A New York Times Top 10 Book of 2011



The Boy in the Moon is Ian Brown's powerful, honest, and emotionally complicated memoir of raising his son, Walker—one of only a few hundred people worldwide who live with an extremely rare genetic mutation.

Born with CFC (cardiofaciocutaneous) syndrome, Walker Brown is a mystery, as remote to his family as the moon. Unable to speak or
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Paperback, 304 pages
Published July 17th 2012 by St. Martin's Griffin (first published April 28th 2009)
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AMEERA
3.5
هالكتب او هالرواية او المذكرة مدري ايش اسميها اخذ مني وقت اكثر من اللازم عشان اخلصه كان ممل اغلب الاوقات وحزين جدآ اي شخص حابب يعرف اكثر عن حياة الاشخاص المعاقين ومعاناة الاهل معهم هالكتاب مناسب جدآ .
Judy
Mar 01, 2011 Judy rated it really liked it  ·  review of another edition
Many years ago, Dear Abby published an essay in her column called "Welcome To Holland," about how having a handicapped child is like planning a trip to Rome but ending up in Holland. It's not what you were expecting, and at first you're really disappointed, but then you find out Holland is nice. You like it there, it's better than Rome.

In Ian Brown's case, when his son Walker was born with a rare genetic condition called cardiofaciocutaneous (CFC) syndrome, it was "Welcome To Hell." Walker will
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Maryam Alaisary
Jun 27, 2015 Maryam Alaisary rated it it was amazing  ·  review of another edition
كتاب طفل في وجه القمر للصحفي الكندي إين براون.. يحكي قصة ابنه ووكر المصاب بمتلازمة نادرة جداً ( متلازمة القلب والوجه والجلد … cardiofaciocutaneous syndrome )..
ووكر واحد من 300 شخص على مستوى العالم مصاب بهذه المتلازمة النادرة.. تنتج هذه المتلازمة عن طفرة جينية تظهر في الشكل الغريب للوجه، التباعد الكبير بين العينين، عدم ظهور الحواجب لبعض المصابين، عدم القدرة على الكلام و قيام المصاب بإذاء نفسه المستمر عن طريق الضرب الشديد، كما يعاني من تأخر عقلي شديد.. أي أنه يحتاج إلى رعاية مكثفة على مدار الساعة
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صفاء أنيس
Dec 24, 2014 صفاء أنيس rated it really liked it  ·  review of another edition
أني أعشق كل الأعمال التي تتمحور حول تلك العلاقة بين الآباء والأبناء ، كانت البداية مع كتاب إرشادات الحياة القصيرة ثم مع كتاب وصايا لمحمد الرطيان تلك الحوارات والنصائح التي لن تجد أصدق منها بين البشر .

هذا الكتاب هو محاولة صادقة وجادة من أب لفهم ولده الذي أبتلي بداء نادر سلبه القدره على الكلام والتواصل ، لم يفهم الأطباء حتى الآن أسبابه .
تأثرث كثيرا بالأب كتب معاناته بكل صدق احترمته لمحاولاته المستمر لفهم مشاعر وأفكار ولده لكني كرهت إلحاده

ستدفعك كل كلمة ومن الصفحة الأولى للتفكير عميقا بحالهم ... وب
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Judith
Nov 21, 2011 Judith rated it really liked it  ·  review of another edition
Shelves: non-fiction
I picked up this book from the library display. This is a beautifully written memoir by a father of a son with a genetic disease (CFC). It covers the experiences, the challenges, the joy, the science, the disability policies, the spiritual aspects, the moral implications (and lack thereof of all of the above). Unless you experience it yourself, you can't begin to imagine the hardship, and how much things are slowly changing, in the disabled community. Of course most of us would not want to exper ...more
Sylvester
I highly recommend this book. Ian Brown writes so well that I forgot about the writing. This is a book about his handicapped son Walker. Again, Brown's writing skill is such that he could bring the reader up close, right into his nightly routine with his son, and then throughout the rest of the book explore every angle of the question of his son's life - genetics, medical support, schooling, therapies, the extreme pressures of caring for a handicapped child, the guilt of realizing it has become ...more
Anne
Sep 08, 2011 Anne rated it it was amazing  ·  review of another edition
A beautiful, heart-wrenching book -- really something special. Ian Brown is a Canadian journalist whose son, Walker, was born with an incredibly rare genetic mutation that left him severely physically and cognitively disabled; in this memoir Brown describes life with Walker (difficult, stressful, exhausting, joyful), researches the science behind the disorder (don't worry, nothing too technical, and easily digestible), and discusses society's attitudes toward the profoundly disabled -- including ...more
منى الحاج
Jul 14, 2015 منى الحاج rated it really liked it  ·  review of another edition
تفاصيل حكاية يرويها والد عن ابنه المصاب بمتلازمة نادرة جدا .. ويكأنه في خطابه يصرخ في وجه الآباء الذين يشتكون أطفالهم الأصحاء أن كفوا عن شكواكم والتفتوا لكنزكم ..كما ويشارك مأساة وقلق وأسئلة الأسر التي تحتضن طفلا مصابا
متلازمة نادرة دفعت الأب للانتقال من طبيب لآخر لسنوات عدة يسألهم تشخيصا غير أنهم حاروا وزادوا قلب الأب حرقة
حينما تخوض تجربة فريدة تجهل كنهها وكل ما سيواجهك .. حينما يكون السؤال رفيقك والقلق دائرتك التي تحيط بك .. حينما تُستبدل أمنية قديمة في انجاب طفل موفور الصحة إلى أمنية تشعل قل
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Suko
Feb 07, 2016 Suko rated it liked it  ·  review of another edition
Shelves: mine
العلاقة التي بناها إين مع ابنه ووكر .. المصاب بـ متلازمة القلب والوجه والجلد (وهي متلازمة نادرة).. كانت علاقة مختلفة
لم تكن مجرد طفل معاق .. يعني من الكثير من مشاكل النمو والمشاكل الصحية.
ووكر كان درسٌ كبير في الأبوة وحسن التصرف
من ينتقل بين حروف إين في رحلتهالاستكشافية المختصرة
سـ يفهم معنى التضحية التي تقدمها لـ أطفالك
.
ما أزعجني بين السطور هو بعض التفاصيل التي لم يكن لـ ذكرها أي أهمية
Laurie
Nov 23, 2012 Laurie rated it really liked it  ·  review of another edition
The boy in the moon is Brown’s son, who has an extremely rare genetic disease that has given him both mental and physical handicaps. CFC- cardiofaciocutaneous- syndrome is not a hereditary disease but one that randomly crops up, so the author and his wife had no inkling that their second child might not be like their first one. Walker cannot speak or even swallow (he is fed through a tube directly into his stomach) or control his bladder or bowels, and requires constant care, which his parents ( ...more
Ernie
May 19, 2011 Ernie rated it liked it  ·  review of another edition
A writer describes the effects on his family and life when he and his wife have a child with a rare genetic disorder, cardiofaciocutaneous syndrome (CFC). The condition is so rare that only tens of individuals are known with the disorder in the 90s. HIs son is profoundly developmentally retarded. No speech. Cognition not expected to advance beyond the comparative age of 2 or 3. The physicians have difficulty diagnosising it. Since it is so rare, predictions based are effects in others are weak. ...more
Eman Shafik
"أحب البلهاء , أحب صراحتهم. لكن للأمانة ,دائماً ما يكون المرءٌ أبله من وجهة نظر شخصٍ ما"
رينيه جوسيني
Corri
May 13, 2011 Corri rated it it was amazing  ·  review of another edition
I considered giving this book a lower rating, then realized that I wasn't seeing the forest for the trees. I was quibbling with the accuracy of some of the medical/genetic information that Brown presented; I had no questions, though, with the depth of thought and feeling and the eloquence in which he conveys them in this memoir about being the father of a profoundly disabled child.

Every special needs child and family has a unique journey. Different family circumstances, different limitations and
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Nina
May 31, 2011 Nina rated it really liked it  ·  review of another edition
During my reading of this quite excellent book, I kept asking my physician husband if he'd ever heard of CFC syndrome, Costello syndrome, Noonan syndrome, and other genetic disorders that are discussed in the book. He had never heard of it. These disorders are that rare--a one in a million misfire of one genetic footprint.
I have a lot of respect for the author, Ian Brown, even though I usually feel people who write books like this are capitalizing on their situation in some way. I think his moti
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Brian
Aug 27, 2010 Brian rated it really liked it  ·  review of another edition
Parenting, especially parenting well, is the hardest task imaginable; but I've wondered often how parents of disabled children manage the pain, the heartache, the endless work. "Through [the hard work, the smells, the intense emotion, the crises:], you hold your child's body, hold its flesh and heat close to you, like a skin of fire, because our need to make us shamelsess,but touch is our truest hunger. Just hang on. Just hang on. Just hang on. Just hang on." The intense fatigue caused by sleepi ...more
Ellen Campbell
Sep 05, 2011 Ellen Campbell rated it it was amazing  ·  review of another edition
A beautifully written book by a father searching for meaning, The Boy in the Moon is one of the most lyrical books I have read about the journey to acceptance for a parent of a child with a disability. As a mother of a grown son with an intellectual disability, I know this path and I know this father's urgency as he travels it. Brown's son Walker has cardiofaciocutaneous (CFC) syndrome, a condition so rare that this father literally searches the world over seeking answers to all his questions. I ...more
Margaret Depaula
I read an article somewhere (do not remember where) about this book and I wrote the name & author down. I have worked in special education for over 20 years and I have had the pleasure to meet and work with many wonderful children. Some of them were born with very rare syndromes but I had never heard of or worked with a child that was diagnosed with CFC, a syndrome so rare that there are only about 100 living in the entire world. This book is the moving, honest and tender story about a boy n ...more
David
Jul 20, 2011 David rated it really liked it  ·  review of another edition
Shelves: canadian
This is a heart-wrenching book to read about a boy with a severe disability and how his family coped until they found help via a group home. The pain, the suffering and the joy was out there and at times, hard to read. I also have a daughter with a disability and when I think of what I went through, it all pales to Ian Brown's turmoils. Plus when he seeks out the founder of L'Arche and sees what others have gone through it was both a relief and pages of sorrow/joy.

Yet the book is an inspiration
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Issa
Feb 17, 2016 Issa rated it it was ok  ·  review of another edition
أول سبع فصول من الكتاب كانت قراءتها ممتعة. لكن ما إن بدأ بالحديث عن الحالات الأخرى التي تعاني من نفس المرض: متلازمة الوجه والقلب والجلد، أو من أمراض مشابهة لها، بدأ الكتاب يفقد تنظيمه، ومحوره الأساسي. وصف المؤلف لإعاقة ابنه ولعلاقته به كان وصفاً مؤثرًا بحق. لم أقرأ كتابا من قبل يصف معاناة الآباء والأمهات في تربية الأبناء المعاقين. استمتعت بقراءته إلى حد ما. لكن تمنيت لو لم يستطرد المؤلف بالحديث عن الجنون وغيره، ما أظن أنها ليست مجال للخوض فيها هنا.
Ahmed Green
Aug 07, 2015 Ahmed Green rated it it was amazing  ·  review of another edition
Shelves: books-i-own
كتاب مؤثر جداً مؤلم اصابني بالاكتئاب والتعاسة والفرح والبهجة اضاف لي الكثير وانار عقلي وغير بصيرتي لكثير من الاشياء التي لم اكن اضعها في الحسبان شعرت بحزن اكبر لانني اعرف صديقا له ابن يعاني هذه المتلازمة وللاسف لم يدعم كما دعم الكاتب من كل الاطراف بالعكس فقد نبذه حتى اهلة "اهل الوالد للطفل المعاق ولصدمتي ان يبتلي الاب بمرض السرطان سبحان الله لا اعلم هذه الاسرار لكن هذا الواقع الذي نعيشه كبشر ضعفاء جعلني اكره كل شيء في الوقت الحالي
Abdellah Askane
كل حرف في هذا الكتاب يدفعك إلى شكر الله على النعمة التي أنعمنا بها ألا وهي نعمة الصحة. هذه النعمة التي غالبا ما ننساها في رحلتنا للحصول علو المادة .... صدق رسول الله صلى الله عليه وسلم عندما قال « من أصبح منكم آمنا في سربه، معافى في جسده، عنده قوت يومه، فكأنما حيزت له الدنيا»
Shymaa Hamada
كتاب جيد ورائع وفكرة جديدة خصوصاً في الفصول الأولي ولكن الوصف والتكرار الزائد فيه أفقده جزء كبير من مفهومه التطويل في بعض الأجزاء والشرح جعله ممل
Jennifer
A wonderful, difficult memoir. I am glad Brown wrote this book.
Abdulrhman
كتاب جميل بيحكي عن معاناه طويلة عشت معاه شهور لحد ما خلصته
من كتر الألم اللي فيه
وشوفت عالم تاني مكنتش متخيل أنه بالألم ده ولا المعانه ديه كلها
Dawed
Mar 06, 2017 Dawed rated it liked it  ·  review of another edition
Shelves: sila-2016
ربما سأكتفي بالقول أن هذا الكتاب من الكتب التي تغير نظرتك لأمور في الحياة . تجعلك تلاحظ اشياء لطالما كانت موجودة لكنها في النقطة العمياء أمامك مباشرة بدون ان تلاحظها .
ولد ووكر بطفرة وراثية شديدة الندرة حتى إن الأطباء يسمونها متلازمة يتيمة؛ إذ ربما يوجد على الاكثرسوى 300 شخص فقط في العالم مصابين بها تسمى «متلازمة القلب والوجه والجلد»
يستعرض الكتاب قصة ووكرمن يوم ولادتهن رحلة الوالد و الأسرة مع ابنهم المعاقو تغير نمط حياتهممن أجل هذا المخلوق الفريد الذي تساءل والده هل هو هبة ناذرة و غالية ؟عليه ال
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Jacqui
Apr 05, 2011 Jacqui rated it it was amazing  ·  review of another edition
Shelves: science, biography
Ian Brown's memoir, The Boy in the Moon (St. Martin's Press 2011), is an eye-opening trip into parenting a special needs child. In this case, Ian Brown and his wife have a severely disabled child with an orphan disease (one which is not studied or researched much), making both diagnosing and dealing with the disease difficult. This particular disease, CFC (cardiofaciocutaneous disease) is extremely rare, gets worse as the child matures and can't be cured. The story deals primarily with the Dad's ...more
Lizzie
May 13, 2011 Lizzie rated it really liked it  ·  review of another edition
Shelves: memoirs, read-in-2011
It's hard to review this book. It was well written, it was interesting. I suppose I'd recommend it. But I found it disturbing and depressing. It's about the author's profoundly retarded and disabled son, his rare genetic disease, and other children like him. Walker, Brown's son, was born with cardiofaciocutaneous (CFC) syndrome, an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. At age thirteen, he is ...more
Laurie Carlson
Mar 20, 2011 Laurie Carlson rated it it was amazing  ·  review of another edition
Recommends it for: everyone
Recommended to Laurie by: Library Thing
The Boy in the Moon, by Ian Brown

As a person with a ‘now’ lifelong neurological disability, I can relate to Ian Brown’s search for his son. My disability is much different than Ian’s, but I can relate to how Ian Brown feels for his son. In my case, my disability changed my life forever in middle life, but I had and lived a full life. For Walker, he never had a chance to experience any part of a normal life, and deep down, it was Ian’s desire to try to draw his life out for him to live a normal l
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Louise
Oct 19, 2009 Louise rated it really liked it  ·  review of another edition
Shelves: biographies
What an eye-opener this biography is. Ian Brown's search to find out who his son is, why he's here, what his purpose is, what his disability means and who he will become, is at times a sad, soul-searching, and profoundly wrenching journey. Yet, it's a lesson in unconditional love, acceptance of the things we can't change, and the courage to face the inevitable. Ian and his wife struggle to make sense of the terrible genetic syndrome that has stricken their son from the day he was born. So rare i ...more
Megan Palasik
Wow. This book is sad, no question about that. Do not read this book thinking you will find a lovey, mushy, happy ending because this is real life. But, wow...this dad is real.

This is the story of Ian Brown. His son, Walker (it's nice to have a father's perspective for once), has cardiofaciocutaneous (CFC) syndrome which is a very rare genetic mutation. It causes the person to have unusual facial features, and usually results in the inability to speak as well as the the compulsion to hit oneself
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Subtitle correction required? 3 23 Apr 03, 2011 08:24PM  
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A Canadian journalist and author.

He is currently the host of Human Edge and The View from Here on TVOntario, and has hosted programming for CBC Radio One, including Later the Same Day, Talking Books, and Sunday Morning.

He has also worked as a business writer at Maclean's and the Financial Post, a feature reporter for The Globe and Mail, and a freelance journalist for other magazines including Satu
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