Cystic-Fibrosis Books

'Robyn's Book' is a collection of short stories, anecdotes and reflections on being a young person with cystic fibrosis. Miller essays many of the aspects of life, from being a frightened teenager in the hospital to coping with chronic disease in college, with a bright, clear, descriptive eye. Many of the chapters are loving tributes to friends who succumbed to CF and other illnesses; others offer her responses to letters from readers.

I read this book back in high school, when I was researching cystic fibrosis; I came across it again a few years ago on Amazon and decided to buy a copy. I'm glad I did, as it appears to be out of print now. This is a shame, because it's a wonderful read and a touching tribute to a talented young writer.

I read this book ten years ago, and I still am touched by it today. It was one of the best works I have ever read - which I did through one day without ever wanting to put this down. This book isn't just about a sick girl with c.f - its about life. It makes you think and cry.

Robyn Miller died of cystic fibrosis at the age I am at now...with years of medical research, we are now to the point where people with Robyn's illness, have a median life age of 30. Robyn's essays about living with a life-threatening illness open your eyes to what your life might have been like, if you had spent a large part of your young life in hospitals, watching as friends, older and younger than you, died of the same disease your body continues to fight.
Her short stories are well written, but as I am a person with CF as well, my main focus was on her essays. A good book all around. God bless Robin, for knowing she was blessed.

A really wonderful book, Robyn has a beautiful gift. As Niel Glixon said, "everyone needs a friend like Robyn

This is defenetly a great book that really gets you thinking about how lucky you are if you're healthy. I had never even heard about cystic fibrosis before I read this. It has defenitly been an eye opener to what else is out there. This book is very good for anyone especially someone with cf or any other desease.

I was saddened to read about Christines struggle and eventual death of cystic fibrosis. This book does a great job of showing you the decline, and we watch as her lungs deteriorate until there is no quality of life left. It was awful because she loved life so much and knew what was happening to her and what she was missing out on.
Some of the dialogue was a little tedious in the recreations so I would have done wothout some of that-but Christines beauty and strength really shined through.

I have read the story and was brought to tears - but with so much laughter - Chris had something people try and get in their whole entire lives. Jackie I have somewhat of an understanding in having a child that is ill from a very young age. Chris is an insperation to parents and children. My son has had chronic asthma since he was four yrs old - and then 6 months ago he was diagnosed with a tumor on his spine the size of an orange. He went through surgery - all is well. The terror you must have felt - doing the hospital thing for years - I look up to you and your daughter - your book was very inspiring - makes the "I feel sorry for myself" feelings go away

I have read this book so many times that I had to buy a second copy-I now own the hardcover and softcover editions! I felt a 'kinship' with Christine from the very first page---we shared the same first name, was born around the same time, loved the same music and I was very familiar with the places Jacquie Gordon wrote about in this wonderful book. For anyone who grew up in the seventies this book will ring a familiar bell.You read of struggles, illness,but most of all you learn that Christine LIVED! Christine rung every ounce she could out of life and she certainly grasped the brass ring! She is a true inspiration to us all! This book brought a richness to my life and I thank Mrs. Gordon for sharing such a wonderful tribute. Christine (in her stardust) must still be singing!

I first read this book when I was in 5th grade and fell in love with it the first time I read it. Since then, I have read this book several times and it is one of my favorite books because there is so much one can learn from the lives of the people in the book, especially from Christine, a girl who has cystic fibrosis. What makes me read it time after time and keeps my attention is the strength and courage of one family and especially Christine. It is so encouraging when you can read someone's story like the one in Give Me one Wish and know that she was able to keep such a positive attitude and not let her illness "get the best of her". The lessons that can be learned from this book will stay with you for the rest of your life and so will the impact of this book. The person that wrote the book was Christine's mom and the story she tells from the journal entries of Christine's to evoking the emotions that Christine had are amazing. This is both an incredibly inspiring book and an incredibly sad book. It makes me cry every time I read it. All I can say is, incredible.

I can't even begin to describe what an impact this book has had on me. I read it for the first time in 6th grade, and since then my entire frame of mind has changed. I've found that I really love things like Monty Python, 80s punk rock, the Muppets, and so much more. So it (this book) has changed me a lot in that way, but it also is such an inspiration because of the fact that Christine never really let her cystic fibrosis pull her down into the dumps. She had "spunk and a spirit" for life, and that in itself is something to admire. In the dozens of times that I've read my copy of this incredible story, I've laughed, I've cried, and I've felt like I can actually identify with Chris...she was a regular girl who just happened to have a fatal disease. Her mom (Jaquie Gordon, the author) caputured Chris's life in such an amazing way, and I wish I could thank her for being so willing to write about it and changing my outlook on life.

I'm an avid reader. From the time I first picked up a book till now I've had thousands pass by my fingers, and only a few have I truly loved.

This book tops them all. Not only is it emotional and touching, but it draws you in quickly and leaves you breathless at the end.

This book is one anyone, of any age should read, if just for the travel you take during it. No one can truly explain to you what you'll experiance while reading it, but you won't be the same person you were at the begining, when you finish.

I didn't read this book, but i did play Courtney in the play John Lennon and Me by Cherie Bennett. IT is based on this book. It follows the story of Star, and her best friend Courtney. The play was touching and if any of you are in Theatre class out there! Don't miss the chance to be in this play!

This book I really didn't want to read it was just an assignement but when I got up to about the 5th chapter I didn't want to put it down.. I really wish the author would have wrote a sequal because I didn't want the book to end. I don't like reading very much but after reading this it was amazing. The book relates so well and the characters are picked so perfect, but it has sad and happy qualities. I don't know how people can write a book this good but she gets an appluase from me because I loved it!

I love this booK! It's so great. What happens is that a girl named Star (no last name...if Madonna doesn't need one, neither does she) has to live in a place called "Hope House" where people go when their diseases take a turn for the worse. She finds her first "real" friend there, but is afraid that when her friend Courtney finds out how sick she really is with CF, she's afraid that Courtney will hate her guts.
This is a great book--I think anyone will love it!

'goodbye best friend' is a brilliant book. I also suffer from Cystic Fibrosis and I can relate to all the problems Star had. If you enjoyed this book you should read One Last Wish-A time to Die by Lurlene McDaniel as it also features a teenage girl with Cystic Fibrosis but it goes into life with CF more than 'goodbye best friend'

I liked the kids.
I can't wait for the next one.
Like the part about the poop!
Jamie and Allen

Great illustrations, great story, and more important great cause!!!!

Ashley and Kyle are super cute... I donated the books to the Ronald Mc Donald House of South Florida and the kids there loved them!

great illustrations.
next one will be available in OCtober

I liked when Kyle thought ashley was sick, but she wasn't, she was visiting her grandma in boston. And I liked how her poop was stinky!
and when Kyle gave Ashley a rose. - Aly

I liked when Kyle gave Ashley a rose. And when Ashley decorated her desk with fosting. Camy

I bought this book for my daughter who also has cystic fibrosis. It has a real nice and simple message. It is very appropriate for a very young reader...say pre-K through early 1st grade. I was hoping for a bit more story for my 2nd grade daughter.

I am very glad that Leah Orr shared her daugther with the rest of us in order to promote awareness and raise money for research for cystic fibrosis.

I think this book is great. The perspective that it is written from makes it easy for a child to identify with and having the pictures of the treatments and all the children is great. I loved this book becuase it gives people of all ages a a little insight on Cystic Fibrosis.

This book is a wonderful tool to show your children with Cystic Fibrosis that they aren't alone. They aren't the only one in the world who needs to do these treatments. To be able to see all these children smiling is so beautiful. My son loves looking at this book and has me read it to him over and over. --Charla (A parent of a child with CF)

My 2yr. old son has CF and absolutely loved looking at the pictures of the other children doing what he does daily. I enjoyed reading it to him. What a wonderful learning tool to have for children and adults! Thanks

I have a 5 year old with cystic fibrosis and he was so excited to see pictures of other children having to do what he does every day - use a vest, nebulizer, take enzymes, etc. He just kept repeating "just like me". This has certainly helped him to not feel like he is the only one.

This picture book tells the story of one day in the life of a little girl fighting Cystic Fibrosis. It was written in order to help these small but mighty few find a sense of commonality and see fun photos of other kids who are just like themselves. Kids will enjoy learning about others their age who do daily treatments, take many medicines, and have hospital stays, and hopefully feel not so alone in their battle.

Teresa's words are filled with insight, purpose, and pure honesty. The Stones Applaud offers the healthy an eye-opening account of life as we've constructed it, and offers the chronically-ill a champion for their cause. Highly recommended.

I really enjoyed this book, and read it in 2 sittings. The author was a courageous young woman and I'm amazed what she accomplished in such a short life. It is written in a pleasant conversational way that I felt like I knew her a bit when I finished.

The one thing I wish it had was a more in depth study of the authors family (Theresa also had a sister who had CF, and died a few years after she did). Her family went on to have a few more children (were her parents aware of the risk?) after her and her sister were diagnosed. I was also curious to how it affected them emotionally, I wish maybe her parents could have touched on this a bit more, just because it was so interesting I would have loved to know more, particularly how her sister struggled as well.

I also recommend Breathing for a Living by Laura Rothenburg, my favorite book.

I think Teresa Mullin achieved her goals in writing this book. It's a truly eye-opening account of what it's like to grow up with a severe chronic illness---how much she had to fight to be able to even be given a chance to do things we all take for granted. I was especially horrified by the account of the sadistic sounding head nurse at her prep school, who seemed to enjoy making her feel out of place. It was sad but telling to read about her delight in very ordinary things like pulling an all-nighter with friends studying and then going very early to Dunkin Donuts---something most of us would not count among life's big events.

I also realized how the emphasis on finding the genes for genetic diseases might distract those who would otherwise work to make everyday life for people with the diseases better. Mullin felt it might have been not that hard to find a way to better fight lung infections and loosen secretions, but so much of the time and money went into finding a cure, and not into finding new treatments. That must be a huge dilemma.

I don't know anyone personally with CF, but I do know quite a few children at my sons' inclusive school that are living with severe chronic conditions, and this book will affect how I see them. I wish the best for Mullin's family. I think her parents should also write a book. They would have much to tell about their life with two children with CF---their younger daughter Susan's story is overshadowed here, naturally, as Teresa was away from home so much, but I would love to know more about her, and about how the parents decided to have more children, and about their work on the behalf of CF. I want to thank them for having this book published.

The book is full of brio, and evinces an emotional maturity that may come only from an early intimacy with one's own mortality. Teresa comes alive again on the pages, with a rare, first-hand account of life with cystic fibrosis that will earn her immortality among her readers.

Teresa's book about her life is excellent. She's a strong-willed, brilliant person who conveys her experiences without a hint of self-pity. She's articulate and honest, and she opened my eyes to the shortcomings of preventative medicine and its neglect of those who are already living with disease. She also reminded me that you can't take a break from fighting injustice. Every day she fought it, through exhaustion and other people's ignorance. Teresa seems to have had a tireless spirit, and I hope this book helps people remember to continue Teresa's fight against medical complacency and the marginalization of chronically ill people.

I was amazed at the honesty of the author's words. As a parent of a daughter with CF , this book helped me understand my issues with my daughter. I was pleased to see that it was a book about real people, not all a perfect fairy tale. It made me think about things from a patient's perspective, and made me feel understood as a parent that has my days of suffering along with my daughter when she is ill. There is alot of religion in the book but I found it to be uplifting when I was given the example oof how Peg's extraordinary faith helped get her through. I wish I knew her but I thank her mother for this gift of her daughter for us all.

I have read this book a hundred times. As a mother of a daughter with CF I found in this book another who understood better than I did some of my feelings in helping my child battle this disease. Meg Woodard so understands her daughter it is amazing. She also lets us get to know Peggy in a very intimate manner and I felt as if they were both friends by the end of the book. Meg does not brush over some of her very real feelings and make her child a saint, and by not fictionalizing Peggy we are allowed a very raw portrayal of a mother /daughter relationship. I will always be greatful for this writers bravery and how her honesty helped me so much in my life.

I wish I had read this book much sooner in my life. My husband died of cystic fibrosis and so much of this book hit home. Meg writes with beautiful, honest, readable style. It is a shame this book is now out-of-print because it is an important book for all who deal with chronic illness from a patient or caregiver standpoint. It does not gloss over the difficult times or questions but very clearly offers hope in the midst of tragedy. We need more books like this to help us navigate the murky waters of "living in the shadow of death." Bravo, Meg Woodson. I can't wait to read your other books.

This book was a good narrative of the final six weeks in the life of a young adult with CF. The account gives an unblinking look at the realities of caring for a loved one with a terminal illness in its last stage. Meg Woodson shares her feelings with each development, both the frustration/anger and the joy. She does not gloss over anything, yet the story is one of victory rather than defeat. Meg and her daughter know she is dying, yet she does so looking forward to entering God's Kingdom where she will see her brother who died of CF 9 years previously. As someone who has walked a similar walk with a cardiac patient in the family, I recognized many of the issues and feelings Meg so artfully covers. It's an excellent read for anyone walking through serious illness or who has a loved one who is.

I LOVED IT! Since this is a true story, I thought it was more valid than a work of fiction. As a CFer myself, I could completely relate to Peggy. Peggy's character is so real, I felt like I knew her. She helped de-mystify so many of my random idiosyncracies. Her doctor in the book is my doctor in real life. I've stayed in that hospital room. It really helped me understand myself and CF much better!

Dana Broehl is my spanish teacher, and I read her book mostly to see how good of a writer she is. I found out that she is an excellent writer who adds humor to her very difficult problems. She writes of her husbands double lung transplants and all of the problems that go along with it. It is a heart warming story of love, faith and living ones life to the fullest. This is perfect for anyone who is going through a difficult situation or has been through one in the past.

This book is an open and honest portrayal of one couple's journey through a chronic illness. The book is full of hilarious and heart wrenching stories, but the message is hope. This brave young couple has gone through the storms of life, but they have weathered them in such a way that they have learned to focus not on the storms, but on the rainbows that inevitabley follow. This is a spectacular book that should be read by the healthy and the chronically ill.

Dana is a gifted writer who has told the story of how her life was transformed by love in a most glorious way. She shares the deepest secrets about meeting Doug and then goes on to tell how she had to learn to share him with a third party - a chronic disease that would surely kill him. Was it worth working to build the relationship? Could Dana and Doug beat the odds, which were stacked against them on so many different fronts? There is so much to be learned from their experience and Dana (a teacher by profession) educates the reader about accepting the truth and overcoming obstacles previously unimaginable. There is a spiritual side, but it does not dominate her writing. There is a humorous side, but it does not detract from the seriousness of the story. This is probably the most educational, amusing and uplifting book I have read in the past year.

My son has CF, and I know that he will someday need a transplant.
I found this book to be a hopeful and honest portryal of life with a chronic illness. I strongly recommend this book to anyone who feels overwhelmed or burdened by life and illness.

What a heartwarming and inspiring book. Page after page you feel of the wonderful example of love and compassion that this wonderful mother had for her children and of the great courage and strength that both she and Lee had as they faced this illness together. On January 16, 2000, Karma Smith Belnap passed away from ALS. Now she and Lee are together again and what a grand and glorious reunion it must be!

I read the condensed version in Readers Digest, and just had to buy the book. I'm glad I did, because the book is even better and more touching. This really is a feel good book, but it has a lot of substance to it. You'll love this book!

As I read the condensed version of this book in Reader's Digest, I was positive that the ending would reveal that Lee was currently happy and healthy and living with his loving family. Lee's mother relayed THAT much hope through her words, that I believed he was still with her on this earth. Apparantly, her pride and love for him transcends the boundaries of life.

Amazing story of a boy which provides proof that there is not an obstacle we cannot overcome. Lee's courage was endless.

My grandmother wrote this book about my uncle! He was the best guy ever! Male, female, kid, adult, anybody will be touched by this fabulous book. It showed me what I should value in life and also showed me what a great guy Lee grew up to be. Lee had a disease that you will learn about and relize what he went through throughout his lifetime. You will be truly glad you read this book and will be touched in so many different ways. It could change the way you look at life! This book also appeared in the Dec. 1998 Reader's Digest. Please take the time to read this heart warming book. You will be so glad you did!

Definately a book that family members should read. Even though family members may be very close to someone with cf, there is still that denial that comes with cystic fibrosis, "he/she looks great". If this book had been around when my son was younger, I would have made sure that certain family members had their own copy to read.

Although the book goes under the heading of being a "The Ultimate Teen Guide," for teenagers with cystic fibrosis, I think that is much to confining a categorization. This is a book that EVERYONE involved with cystic fibrosis should read. Children probably should not read it until their teen years, but parents should read it long before their child reaches the teen years. Doctors and nurses should read it in their student years. Extended family members - grandparents, aunts and uncles - should read it so they really learn what cystic fibrosis is all about. I think parents of children with cystic fibrosis sort of insulate their families from knowing what cystic fibrosis is really about and this book explains it in a vividly accurate but extremely readable manner. Parents of children with cystic fibrosis would do well to buy more than one copy, wrap them up and give them to the rest of their family. I wish we had something like this when we needed it instead of just a few pamphlets and folders.

Cystic fibrosis is much more than a chronic, life-threatening medical condition. The disease is bad enough, but it has far-reaching effects on many parts of the body. Those who suffer with it are condemned to a very complicated way of life they'd never voluntarily choose. Friends, family and loved ones are affected by it too.

Melanie Apel deftly guides the reader to an understanding of many facets of CF: biological, emotional, psychological and social. Her point of view as insider/outsider/guide is successful and she has both empathy and knowledge based on her experience and training. She's employed a good voice for the target audience, too--it's direct and doesn't sidestep issues, there are lots of real-life stories, and when she explains the science end of things she doesn't talk down to readers or become too overwhelmingly complicated.

The last part of the book is necessarily sad--most with the disease eventually succumb to it, but the book ends on a hopeful and courageous note. If it had been around when I was a teenager, I would have wanted to read it. I'm glad it's around now that I'm an adult. I learned a lot.