Cystic-Fibrosis Books

If you like romance novels then you'll love this on. It tells the story of April who is diagnoised with cancer, she falls in love with a young man named Mark.I won't give away the ending but it's a real tearjerker.

I picked up this book at my local bookstore because i absolutely adore Lurlene McDaniel's books. They are so heartwrenching and tug at your heart strings. This book was especially great. I read it in two days and could not put it down. i recently bought her 2nd part to the novel. This book is absolutely incredible and if youre into those heart-breaking-loving-romantic stories this is the book for you. Anyone can relate to this story no matter what. Not only is this a great read but its educational.i learned a lot about CF and how it effects people. PICK THIS BOOK UP TODAY!

I loved this book! I still do love this book! I am so happy that I chose this book randomly off the bookshelf at the book store, because if I hadn't then I wouldn't have gotten to read "Till Death Do Us Part".

April's trying not think of why she might really be in the hospital agian. She's 17, and hasn't been in the hospital since she was 5, and had a brain tumor. She's been having terrible headaches lately though, and she fainted in class. April is desperatly hoping that the headaches arne't related to the brian tumor she had 12 years ago. Her worst nightmare comes true though. The tumor's back. Only this time, they can't just surjically remove it. It's too close to her brain. Radiations her only hope.

April can't believe it. When she tell her popular soccer playing boyfriend, Chriss, he doesn't know how to handle it. Her best friend, Katie, is trying, but it's hard to know how to act.

The only good part abaout being in the hospital is Mark. Mark has CF, and has problems breathing. His illnes is terminal, and he will die. He falls in love with April though. At first April's afraid to date him, because he's sick, but her makes her feel more special than anyone in the world.

April begins to fall in love with Mark. He always knows how to cheer her up, and truly wants to be with her. She loves going to the track to watch him race cars, his hobby. It's bad for his CF, but April knows that it's one of the few ways he can control his life. She also loves going to their favorite Italian restaurant, and just being with him.

When Mark asks April to marry him, she says yes. She never dreamed that the wedding would never happen. How could she have known that there would be a racing car accident? Thar Mark would wind up in the hospital.

This book was so sad, and I just wanted to bawl my eyes out. I can only say one thing. DON'T READ THE SEQUEL. In my opinion, it absolutely ruins the wanderful story that Lurlene McDaniel has writen.

As the widow of a man with cystic fibrosis I can relate to this book as if it was my own. I was amazed at the reality used in this book and how true it can be to the actual feelings that a person feels in this situation. When my husband asked me to marry him at age 23 (me being 19) I agreed thinking that we would have many happy years together. However after being married exactly one year to the date his CF worsened and he passed away after 1 year, 6 months of marriage. He left behind a wife and a beautiful son that he was never able to meet.

It was so sad that in the end i cried. I know what its like to loose someone close to my heart and it made i easier to relate to this book. The book kept me wanting to know what would happen to April and Mark. It showed me that it's just as hard fo other people to go through hard times.

I watched the excellent TV movie made of this book when I was around 8 and then read the book over and over, until it fell apart. It absolutely broke my heart. When I was in high school and I met my first husband, I found out that he had lost a stepbrother to cystic fibrosis, who made it to the age of 18 before he died. Years later, my first husband still had the things Scotty willed to him, a poster and all of his Weird Al tapes (the Make a Wish Foundation helped Scotty to meet Weird Al at a concert and got to go backstage, shortly before he died). His remaining stepbrother, shortly after we married, married a woman with three children. Her youngest, a daughter, had severe CF. We loved her dearly, and was devastated when she died, like Alex, at the age of 8.
This is a heartbreaking book, but it's worth it. After you're done reading the book, donate money to the Cystic Fibrosis Foundation.
Another heartbreaking story on their site explains why they use roses on a lot of their promotional materials. A mother on the Board of Directors who had several kids with cystic fibrosis, was overheard by her toddler son on a phone call. He was too young to understand what she was saying, and too young to know he had a fatal disease, so he asked his mother what "sixty-five roses" meant. Many children now call CF "sixty five roses" and that's why the CF Foundation uses rose imagery.

excellent service. book received in excellent condition, just as described. would definitely order through bookrescue again.

As the father of an 8 year old daughter with CF (who even sorta looks like Alex), you can imagine that this is not an easy read for me. I read it once 8 years ago, when she was diagnosed, and it was bad....I have tried to re-read it again 8 years later and it's even harder to get through. Not a day goes by where I don't think about that I most likely will have to go thru what Frank did.
I"m not sure i'll be able to handle it. My optimism that there will be a cure in time has dwindled to stark reality that it's not likely to happen soon enough. Thank you Frank for writing this, at least I know i'm not alone.

After supporting Cystic Fibrosis as one of my personal charities for many years, I saw this book in a used book store and bought it. I didn't read it for some time. In fact, it was after I met a family who had a son with CF. I became friends with him - and only a few months later, close to his 21st birthday, he was gone. Then I read the book.. I must say, this is a heartbreaker - but Alex is such an amazing young girl! Written from the experiences of a father watching this terrible disease take his little girl. I strongly recommend reading - and then reaching out to your local Cystic Fibrosis Chapter.

My daughter was diagnosed with CF 4 months ago at the age of 2.5 yrs. I was immediately drawn to books written from the parent perspective (it seems most are written by young adults who have it), and I first read "From a Taste of Salt" and then "Alex".

I mostly loved this book; I love how well Deford delves into the psychological aspects (of ALL the family) of having a child in the house with this disease. I can easily picture in my dealings with my own daughter many of the conversations with Alex he relates.

There are two things I disliked. One is that he really over-makes Alex to be a saint. Everyone says my daughter is so sweet and so good at taking her medicines and therapy and yadda yadda, but would you ever say the OPPOSITE to a parent with a sick child? My daughter is still a toddler and no saint, but Deford leaves out most of the day-to-day "normal" parts of her life that would show her regular humanity instead of her sainthood.

Secondly, It became obvious at times that Deford was, unfortunately, projecting some of his own thoughts, feelings, and memories onto Alex's actions. I do not blame him for this one bit, considering the great devistation it is to lose a child and then try to write about it. But for some reason it really annoyed me.

Overall an excellent book, and I recommend it to any parent with a newly diagnosed child struggling through the emotional and psychological steps of accepting CF. You find out that you are not alone in your many confusing thoughts. I only wish he had perhaps been a more religious man, and touched on the acceptance of this disease from God.

The recipies in this book are so divine! They sound so wonderful, my mouth waters! Beautiful full color photos & advice about certain ingredients depending on your stage of the diet. I would have given this book 5 stars if I could use it. I find that the recipes are far to advanced for my stage of the diet. I think it would be a year easy before being able to use this book.
This is not a newbie book! If you are a newbie to the SCDiet, this is a book to keep in mind for when you are further along. If you are advanced in the diet, then by all means get a copy!
Health through diet is a beautiful thing.

I have a growing number of friends who have to follow a restricted diet and this book really fills the gap in my collection of recipe books by putting together delicious recipes that are completely thought out from a nutritional perspective. I no longer feel that I have to compromise on taste to put together a dinner that we can all enjoy.

The book made me more conscious of what goes into what I cook and has changed my attitude to ingredients. Whether or not we have a gastric condition, we should all make an effort to eat food that is healthy and pure. This book addresses that simple goal superbly.

I found many interesting recipes in this book. So far every one that I have tried has been fantastic! I LOVE this book!

Pictures are enticing, ingredients are not too exotic, and recipes are not too labor-intensive! Even my non-SCD-diet family enjoys my creations using this book as a base!

I would suggest any with any type of digestives issues to try out this cookbook and the many others Specific Carbohydrate Diet cookbooks available such as Every Day Grain Free Gourmet also sold on Amazon. This diet will make you feel better as well as giving your entire family as a whole a healthier lifestyle. And the best part is the recipes all taste so good that you don't feel like your on a "special diet". You do have to spend a good amount of time in the kitchen preparing meals from scratch but to me the end result is worth it. I personally have not felt this good living with Crohns disease in years! Finding the SCD diet has given my life the positive turn around I needed!

inspirational and beautifully illustrated.
a must read.
also loved Kyle's First Playdate for kids with cf

I strongly recommend this book to anyone. Whether or not you have a family member or friend with a terminal illness, this book will touch your heart. A few months ago I had the pleasure of meeting Terry, Don and Lo. They are an amazing family! When they told me about their book, I couldn't wait to get a copy and read it. It took me two days; I couldn't put it down. Our daughter was diagnosed with CF at 9 weeks of age so I could relate to many parts of the book. This book has inspired me to never give up on fighting for this disease and for those who suffer from it. Many thanks to the Detrichs!!

So many things in your book made me want to shout "THAT'S IT!" The smell of the formula, the loose stools before the enzymes kicked in, the entire shelf in the kitchen filled with her medicines, the astronomical medical bills, the exhaustion, the depression, the frustration. No one understands except the parent of a chronically ill child what it is really like. Your book does a wonderful job of giving others a glimpse of what our lives are like. I plan to get copies for all my sisters to read. Thank you for taking the time to put it together. I plan to keep you all in my prayers.

While I respect the idea of human spirit rising over adversity, I did not find that this book touched me in a way that similiarly themed stories did. Though the book reads easily, I found it to be rather forced at times and somewhat choppy in the story telling. I also found that the authors spent more time celebrating the way THEY overcame the adversity rather than their daughter. Additionally, I did not deeply feel the pain and the anguish that made the rising spirit all the more meaningful. It is an interesting account of the ways in which CF is now being treated and the ways in which everyday people can contribute to the fight. However, if you found this book interesting or want to learn more about the impact of this devestating illness, I beg you to read Frank Deford's "Alex:The Life of A Child". I find that once you've been touched by the spirit of Alex Deford, much else will pale in comparision.

I cried my tears as I read your story. I am still in awe over the ability of the human spirit in adversity. Lo and her family have touched thousands of hearts thru their lives and thru their book, no doubt inspiring countless others to stretch themselves to do something they fear is impossible, or to forge ahead when life seems like "too much to handle". Now, when I catch myself complaining about anything at all, I remember the Deitrichs, and the fact that Lo has to "fight" for every breath she takes. I humbly shift into gratitude for my life and my health, and I send loving thoughts to this and other CF families, and pray that my strength may be equal to theirs if I am ever faced with seemingly insurmountable odds, odds that they live with every single day. Thank you for opening your lives to others.

What a powerful book! The twins take you through a very tough physical journey of their lives. I could not put this book down, and I would be shocked if it did not touch your heart. This book is truly inspiring!

Wow. The twins' story about growing up with cystic fibrosis, their biracial family, and succeeding in going to college, finding love and ultimately receiving lung transplants is profoundly moving. Their honesty about their good (and not so good) experiences, particularly with their parents and brother, and later with boyfriends, is absolutely gripping. Their persistence and hope in the face of repeated challenges, conveyed in a well-written narrative, is awesome and makes this book a great read for anyone facing challenges or wanting inspiration.

The Power of Two is an amazing "Duet" written by twin sisters with a powerful will to live inspite of the challenges of living with a deadly genetic disease. Each takes turns "singing" the melodies of her own unique yet shared experiences. This is no sugar-coated fairy tale. It is a novel about survival even though the medical odds are stacked against you. The physical, social, psychological struggles, failures and triumphs are explicitly detailed. You will weep, you will cringe, you will exalt as they progress from climbing a few stairs with difficulty to climbing Yosemite's Half Dome!

In "The Power of Two: A Twin Triumph over Cystic Fibrosis," we meet identical twins, Isabel and Anabel Stenzel, who were born with a deadly disease: cystic fibrosis (CF). As adults, the sisters underwent the only "cure" for CF -- lung transplantation -- and are now living their lives at full-speed after childhoods dominated by chest percussions and drug therapy, numerous and lengthy hospitalizations, constant medical scrutiny, and watching their friends with CF die at young ages. "The Power of Two" is a beautifully written book that will amaze you with its brutal honesty, move you to tears, and inspire you to count your blessings. The remarkable Stenzel twins have an extraordinary lesson to teach us all: never give up, live life to the fullest, and don't take the incredible gift of breath for granted. Their story will linger in your heart long after you've closed this book.

I agree with what Tiffany wrote before me. I'm also an adult with CF, just hit 30. I had considered writing my own little CF memoir, but these girls did such an awesome job with their vivid depiction of their experiences, thoughts and emotions throughout their lives, they covered it all. Their journey brings you into the world of all stages of CF from everyday maintenance to near death experiences, how it's changed since the 70's, the treatments, the pain and the joy in meeting others in this special CF club. As others have said, this book covers so much more. With a German father and Japanese mother, they take you through life as biracial twins in America and Japan, their travels around the world, and the amazing support they found in family and eachother, then much much later boyfriends. Their story is brutally honest about their experiences, and they've had some tough ones. What I loved most was this honesty and ability to infuse some funny in their situations and not take themselves too seriously. It's refreshing. The narration of their mother was hilarious, even though she's their biggest supporter it seems. My only complaint is I'm jealous they went to CF camp and met Bob Flanagan, the camps were gone by the time I knew they existed.

Brilliant girls, thank you!

1. A Time to Die/Lurlene McDaniel
2. Random House Children's Book, 1992, 154 pgs.
3. Young Adult
4. A Time to Die is a fiction story based on a young lady who has cystic fibrosis.

A Time to Die is a fiction story based on a young lady who has cystic fibrosis. Everyday she goes through therapy to help her breathe. She meets a boy named Vince, who also has cystic fibrosis. Vince helps Kara through the tough times, when Kara really needs someone by her side. They are both in and out of the hospital and are struggling to try to survive.
Lurlene McDaniel really showed in great detail the affects cystic fibrosis could have on a person's life. It is a wonderful book to read, especially if you do not know much about cystic fibrosis. Kara falls for a boy, which makes the book more interesting, because she does not want him to be turned off by the cystic fibrosis she has.
A Time to Die is a book you could not live without reading. This book left me with wanting to find more about cystic fibrosis and the book made me want to read more of Lurlene McDaniel's books.

this is a great book about a girl named kara who is dying of cystic fibrosis everyday she must endure therapy to thin the mucus so she can breathe i have cf as well and am so glad someone is trying to make people more aware of cf its such a horrible disease i hope other people read it and become more aware of this disease so a cure can be found

This story has to be on of the best stories in the entire One Last Wish series. It shows the hardships that teens that have Cystic Fibrosis have to endure daily. Kara Fischer, a girl with C.F., shows what she goes through every day with this disease, and how it affects her every day life. She deals with the same things we deal with and more; and it shows how determined she is to have a normal life. When she falls in love with Eric, and he finds out about her C.F., I was surprised to see what he did. This book is a heart-wrenching story that brought a tear to my eye while reading it. It is an amazing book with a great truth behind it. Showing all of the things that happen to the people suffering from the disease, in using a child for the main character, makes you relate to the character even more; whether you have the disease or not.
Lurlene McDaniel is an amazing author who does her research to make the story even greater. Knowing the facts about what is actually happening and putting it down with a plot and characters, teaches you about the disease or problem while keeping you interested. The powerful way she writes makes you stay intrigued, and makes you want to keep turning the pages to see what happens.
You want to know whether they are going to go out with someone or if they are going to get sick again. You begin to become that person and can feel what they are feeling, and can hear the voices of the other characters talking to you. You understand what is going on in their minds and what is in their hearts. Their feelings become yours; you cry when they cry, you feel the touch they feel, and you hear the words they hear. When you cry with them, you cry on both the inside and the outside as well. Your heart and eyes fill with tears and you just can't help but cry from both parts of you. You are them.

I really liked this book.I couldn't stop reading it.I realized how much I take life for granted.It is really sad to think about how much we take everything for granted.This book helped me.I really think it can help others be more appreciative.

A Time to Die has to be my favourite book in the OWL series. Kara and Vince's struggle to live is very inspiring and I admire them both for their courage and determination. Because I, along with my brother, am a victim of CF, I was glad to see someone trying to make the world more aware of this disease. I could really relate to Kara and Vince and found their thoughts and feeling about their disease to be similar to my own. This book is very well written with interesting characters and plot twists. This book brought a definite tear to my eye.

My daughter was diagnosed in 1997 at 1 month of age. Fortunately for our family we had the best specialist to help diagnose and treat her condition almost from day 1 of her life. And her doctor is none other than Dr. Orenstein himself (or just Dr. O to us). I can speak from personal knowledge that he is without a doubt the most informative doctor I have ever been around. He truly cares about the children in his care and he takes a proactive role in their health and well-being. His book is considered the CF bible by those in the know in the Pediatric Pulmonary field. As you read this picture a man with a bow tie and sandals explaining this to you. It is very easy to read and understand which when it comes to this disease is very important. I am happy to say that my daughter is almost 12 and thanks to Dr. O and his staff is in excellent health. If you know someone with this disease get them this book or better yet get it for yourself as well. Knowledge and understanding of the disease can really help.

This book accurately describes the disease cystic fibrosis (CF) and offers guidance in self-management on day to day problems. As a mother of a son who has CF, I highly recommend this book to any family dealing with CF.

I eagerly await the 3rd edition of this book. As a fully involved CF parent, my 8y/o daughter's care has benefited from my increased knowledge. I can form theories and question her caregivers from a more informed perspective and that is a win-win situation. If you have a child with CF, you should have this book. I call it the CF Bible.(Although encyclopedia would be a more accurate description.) I feel this book should be given to the parents of all newly diagnosed children.

I really enjoyed this book. Anyone who needs to learn anything about Cystic Fibrosis should definitely buy this. It covers everything! I read the whole thing in 4 days and I understand so much more now.

Im a teenager and was diagnosed with CF when I was born in 1989.
It was recently that I wanted to do some more reading on my disease. I looked through some books and was shocked by what I was reading. As many of you know, the out-of-date books on CF can have some very frightening information, like death and more infections, and etc. It was I discovered this book that I was so much more relaxed about my condition. This book is up-to-date and tells the real facts about this disease. After reading this, my disease doesn't scare me anymore.
If you are a teen, like me, I suggest you read thid.
If you know anybody with CF, you should read this book or have them read this. Don't let them read those early books on CF with the grim facts...have them read this with the true and helpful facts.

I'll be honest, all in all I liked reading about Andy's journey with CF. I can understand how he feels and he does a good job of describing what he has been through. While reading i felt as though half of this book was written to help you understand andy and his journey and the other half is simply a "look what i did." At times he came off as whiny and emotional. Also although it's never metioned it's written as though andy grew up with "deep pockets." Which is fine, it just helps me understand him. Overall i feel for you Andy. Fight the good fight

Whether or not your life has been touched by chronic disease, you will be able to relate to Lipman's story of overcoming adversity. The candid, honest prose reminds the reader to seize the day. The work has affected me more than any other. I would highly recommend it.

I am not a reader, but I could not put this book down. I read it on the beach at Cabo San Lucas. I have kids who are struggling with health problems. This book gives hope and strength to anyone who is facing impossible odds. Andy is obviously a man of deep character and tremendous resolve. If you are struggling yourself or know anyone who is, get them this book.

I found the book totally inspiring!! I pray that when my daughter is old enough to read that she will be as inspired as I was. Thank you Andy for doing such a wonderful book!!!

This was a great book it really inspired me.

What a fantastic, heartwarming story! This is a great read for anyone interested in a human interest story.

What a great kid Burke must have been! I wish that I had the chance to know him. It sounds like his spirit and his legacy are felt by those who knew him and those who read about him or come across his namesake bear every day.

Burke's Tour is about a young man, Burke, who lived with a progressive inherited disease called Cystic Fibrosis, who began collecting bears at a young age. It tells of how Burke's wish to 'help' find a cure for CF comes true in a Boyd's Bear, a bear named after him. Burke P. Bear to date travels the world spreading CF awareness, along with love, peace, having fun, and raising millions of dollars in research toward finding the cure. The cure that Burke so wanted to help find.

My Burke P. Bear and Burke's Tour book have a special place in my home. Those moments when I glance at them, I smile and wonder where in the world at that very moment Burke P. Bear may be--spreading CF awareness, love, peace, having fun. A heartfelt "thank you" to the author, Bob Derr, for sharing Burke's legacy with the world.

WOW WHAT A BOOK. YOU LAUGH AND CRY THE WHOLE WAY THROUGH IT. THE BURKE BEAR HAS BEEN A HUGE PART OF OUR LIFE FOR THE PAST 4 YEARS. WE HAVE ALSO BEEN LUCKY ENOUGH TO HAVE MEET MR.BOB DERR AND HIS WIFE LINDA.WE HOLD THE DANCE FOR A CURE FOR THE PACFI.. WHEN YOU BUY THE BOOK PLEASE KNOW YOU ARE HELPING FAMILIES LIKE MY OWN GET STEPS CLOSER TO A CURE...

Burke's Tour embodies the inspiration that fuels the quest for a cure to Cystic Fibrosis. Its pages relate the support and journey of friends, family, communities, and PACFI. This book is a tribute to Burke Derr and the bear named after him. Even more than that, this story shows what a boy and a bear can continue to teach us about life and the human spirit. As a frequent Amazon.com purchaser, I highly recommend it to all.

I've read Bill William's *Naked Before God* a couple of times. It's an incredibly painful chore, because the book is as honest an account of spiritual searching and physical suffering as I've ever encountered. Williams' ultimate concern is the problem of innocent suffering, sometimes referred to by theologians as the problem of evil. In a nutshell, the problem is this: how is belief in an all-loving God compatible with the presence of undeserved suffering in the world? It's the question raised by Job. It's a question that millions of people ask themselves in their everyday sufferings. And it's a question on which more than one person's faith has been broken.

Bill Williams faces the problem headon in a mode that I suppose can be called autobiographical-imaginative-theology. Weaving in stories of his own struggle with cystic fibrosis, fictional ruminations of walking and talking with Jesus as a disciple named Nathaniel, and scriptural/theological reflections on the problem of innocent suffering, Williams presents us with a one-of-a-kind meditation on what it means to be a fragile, suffering, frightened, but also occasionally angry, defiant, and hopeful human being. He pulls no punches in the book. At times his anger, his sense of unfairness, is overpowering. At other times, his gratitude for the slightest of blessings, the most trivial (to our jaded eyes) gifts, is equally overpowering. Ultimately, Williams awakens to the suffering God who loves, who knows what it's like to be a broken pot (p. 299), who lost hope in the depts of His suffering, and who still, in a mysterious way that even He, perhaps, doesn't understand, overcame.

There are few books that make me laugh out loud when I read them, and fewer still that make me weep. This one did both. It's not a feel-good book. But it is one that will touch your deepest core, and in the process move you closer, perhaps, to an embrace of the mystery of God and suffering. Bill Williams died shortly after *Naked Before God* was published. I remember him with gratitude each morning in my prayers.

This book reminded me of so much of my seeker readings. It breaks boundaries, synthesizes psychology and spirituality, connects our true nature with physics, and places us, non-judgementally, as limited, loved, children of God. When you stop wanting eternity, you realize that what you've got is pretty darned good!

I wish I could persuade everyone in the world to read this book. Although it is written in a Christian context, it is a book for everyone regardless of religion or belief or even lack thereof. It addresses the universal question of Why me,God? It forces you to face the world as it is and it forces you to face yourself and to accept yourself as you are. Not that you can't change or that you shouldn't change. You can and you should. Yes, there is pain and suffering in this world. Yes, it's terrible and unfair when it happens to you or to someone dear to you. Yes, there is no answer for it. I heard once that for a believer there are no questions, for a non-believer there are no answers. Put another way, for a believer no explanation is necessary, for a non-believer no explanation will suffice. I do not subscribe to the last chapter of the Book of Job where he is made whole and then some. I think some ancient Hollywood writer added that. I believe that Job's story ends with him sick and suffering----but loving God nevertheless. Life can indeed be very painful, more painful for some than for others, but God loves you and suffers with you. Read the book.

This book is unique in that it carries on a conversation between Jesus, the disciples, etc. with the author of the book in present time. The author has cystic fibrosis and diabetes in real life and is a character in the book as well. He is also a theologian and physicist which makes for an absolutely riviting book. He holds nothing back when questioning pain and misery on earth. The dialogue between all of these people - it will stretch your mind, and you will look at life differently. For the better. I have purchased this book to give as a Christmas gift. I wish I had enough money to send out dozens of copies to friends. It's that good.

This is the best book of theology I have ever read. God is present, loving and accessible. Bill Williams' broken body is representative of all the shame, guilt and abandonment that I have felt. I also learned a lot about cystic fibrosis and the difficulties and impossibilities it brings. I wish I could have met him. I wish there were going to be more books from him. I wish he could have been my pastor. An amazing book filled with wisdom and insight. Recommended for those who are questioning their Sunday School education, grappling with faith issues and those who want to know jesus (sic) as their savior and mentor. Although God is referred to by male pronouns (Williams explains his rationale in the introduction), this is a beautiful read for feminist theologians.