Muscular-Dystrophy Books

I own this book, and even purchased a copy for the use by my Alma mater University for their children's collection of books.
This book is the FINAL published book of poems by 13 year old Mattie Stepanek, who died on 22 June 2004 from a rare form of muscular dystrophy: Dysautonomic Mitochondrial Myopathy. He was a genius by intellect, but as sweet as a boy could have been. I recommend this book because of Mattie's keen insight into major human issues such as LOVE, PAIN, SUFFERING, FRIENDSHIP, SICKNESS, LONLINESS, FULFILMENT, DEPRESSION, AND IMPENDING DEATH. By late Autumn of 2003, I believe Mattie surmised that not only was death possible but was probably imminent.

By Dec 2001, Mattie and former US President Jimmy Carter became close friends, and this undoubtedly had an impact on Mattie's later poems. You actually SENSE Mattie becoming a Peacemaker like his childhood idol, Jimmy Carter. This book is more than simply GOOD poetry, but the plethora of photos from his mother's collections give the reader a visual biography of a boy who ROSE ABOVE his fatal sickness and who proved to be an angel in disguise for millions upon millions of people, when the day was Done! A MUST BUY Book.

Mattie's writings have touched my spirit like no other. His wisdom beyond his years and how his books make us look at life, especially our own, in a different light, has to be from God, therefore, making Mattie an "Angel Among Us" in my book.

This book is a must-read for all adults, and older children. The amount of suffering this child endured, and yet could find a reason to grasp life to the fullest, is a lesson for all of us. Mattie had a special gift that only comes from God, with messages that are profound. And yet, the messages are delivered in utter simplicity. It will absolutely change your life.

I got this book last year from my grandmother and really enjoyed it. The poetry was nice, even if most of it didn't rhyme, and the color photos were excellent. This book was an awesome collection of Mattie's poetry from when he was really young, to his last words before he died in 2004. The only thing I wish was in the book was more information on Mattie's brothers and sister, so everyone could know about them as well as Mattie.

If anyone wants to learn about courage I would suggest this book. What a remarkable person Mattie Stepanic was, his poems will pull at your heart strings as they did mine. It will be a book to treasure all my life, and reread.
Betty Blake
Book lover in Vermont

Lowell does excellent work in this book capturing life at the Olympics, mixed in with family problems, and how athlete's aspire to greatness despite all the odds. It is superb. I would definitely recommend it to anyone.

Tori must have felt wonderful after winning the Olympics. This book was sad and happy. I wished that Tori could've somehow worked her strength past this awful disease and still have been able to skate. A beautiful heart- wrenching story.

This book was great and I liked the way it ended.The book shows Tori's feelings,and also had chapters on other characters insights.I give this book five stars,it was the best of all the books in the Silver Blades series.It's great!!!!!!!!!!

This book is about two skaters who have followed their dreams to skate at the Olympics. Melissa Lowell uses her imagination to create two skaters going to the Olympics instead of Kwan and Lipinski. This book is one of a three-book miniseries and of all of them I think it's the best! I'd give this book 5 stars, the first one for the drawing on the cover, the second one for the creativity of the book, third for the surprises, fourth for the adventure, and fifth for the humor. At the end there is a big surprise! Tori, who has a disease that can have her end up in a wheel chair, won the gold and Jill is in third. It was a great book. I'd recommend it for ages 7-12. I hope you enjoy the book!

This is the final book of a three-book mini-series. The end of every chapter leaves you hungry for more. It is about two girls trying to rising to the top of the world of figure skating. In Chance of a Lifetime, Tori and Jill are competing in the Olympics. Tori is skating with a serious muscle diease against all odds, and trying to be strong when all she recieves is pity. The other girl, Jill, finds out how differently alternates are treated at the Oympics than skaters competing. This book is sad at some points, funny at others, and really a thrilling book overall. It's a must for girls who love ice-skating.

What an amazingly well written book! I have never read a more true account of what it means to be the parent of a child with special needs. The Kehl family has been marked for generations by muscular dystrophy. Anyone who wants to understand how it really feels to deal with such a legacy should read this. The power of denial was so powerfully shown by how long the author was able to keep up the idea that her son was "just having trouble with the bus stairs", and when she finally did get a diagnosis, I found it the most amazing analogy to say that being able to handle a child with special needs is like deciding you are going camping, knowing nothing about it and having none of the equipment, and then finding your closet is filled with a tent, campfire dishes, flashlights, etc---you already have what you need to handle it, and you never knew. The effects of a child's sickness on a strong marriage are also so truthfully shown here---how you can blame and yell and say horrible things and still love each other and the child so much. It is hard to believe this author has not written many best selling books already, as this book is just astonishing. It came to me at a time when I really needed it, when I am dealing with the possibility of a serious diagnosis for my child, and I am so thankful it did.

This book is not your ordinary story, it is the blood, sweat and tears of a brave family suffering from generation to generation with Muscular Dystrophy. Christine O'Hagan should be proud of how elloquently she is able to share her losses from her brother Richie to the ultimate loss of her own precious son Jamie.
She shares so much in this book, you can't help but wonder how she was able to sit all those long hours and re-live so much sorrow. But don't be fooled. Christine knows just how to tell her story with her very fine sense of humor which has always been
her strong tool through her struggles.A book to read not only for the journey of her life, but also for what it gives the reader.... The true meaning of what live is about. God Bless you Chrissie.

Christine Kehl O'Hagan, born in Queens in 1950 carried a tragic secret. Duchenne's Muscular Dystophy (DMD), which is an X-linked trait runs rampant throughout her family. DMD claimed several male relatives throughout the generations in her family. Females are born carriers of this tragic condition and every male born in a family where this trait is present is at risk for developing it at some point in life.

As much as I enjoyed this book, there were two things that irked me: the constant references to sneakers and being Irish. Even the tablecloth was made of Irish lace! The O'Hagans' beagle was named Finney! Sharing the traditions of Irish heritage was all well and good, but the constant references to being Irish did seem a bit excessive at points. As for the sneakers, the symbol of mobility and childhood play and sports, the message could not have been made more plain.

Christine's younger brother Richie Jr., born in 1957 showed signs of MDM early. Poor coordination and balance and difficulty managing stairs were the tip-offs to his having MDM. By 1966 Richie was no longer able to walk and remained confined to a wheelchair for the remainder of his life. He died in July of 1979 at the age of 22.

Some very touching anecdotes are shared; in 1961, Christine, then 11 would take her 4-year-old brother to the neighborhood church and pray for him. That was really heartwarming. I also liked it when the neighborhood boys took Richie under their wing and would hang off the back of his wheelchair, including him in their games. I loved it when Richie would sing the Beatles' songs from 1967's "Sgt. Pepper" in 1967-68. The Kehl children's Aunt Nelly's bizarrely quaint expressions involving hygiene and bathroom usage are sure to bring a smile; the unfamiliar term "kitty murphies" was made quite clear in the context and feline reference.

Christine and younger sister Pam (born 1953) both had sons with DMD. Christine's younger son, Jamie was diagnosed at age 7 on October 16, 1980. He was tested in the hospital for DMD in December of 1980. Her older son, born in August of 1971 did not inherit the condition. Sadly, Jamie died on May 20, 1998 at the age of 24, one year after his maternal grandmother died.

Pam's two sons, born in 1976 and 1977 also had DMD which ultimately confined them to wheelchairs as well. I especially liked the descriptions of Queens in the 1950s and 1960s and the parts about family interaction and the way Jamie's brother went to bat for him and that they owned a beagle, although I disagree with the author's finding that the hound was homely. Beagles are beautiful little hounds. Luckily, during the roughest points and bleakest moments the family stayed together. Christine's friends, Ruth and Tony sounded like genuine angels.

The book ends on an upbeat note with the 1999 birth of Christine's granddaughter, Alanna Nicole.

A book you can't put down - that's the way I would describe Mrs. O'Hagan's The Book of Kehls. You get the feeling that you grew up with her in the way she draws the reader into the most intimate part of her life in dealing with her parents, her siblings and her disabled son, Jamie. This book is about an Irish family and how they deal with a disease that affected everyone in their family. It is about a mother who is above all human, unashamedly sharing her emotions that run the gamut from being frustrated to being hilarious. Above all, this book shows Mrs. O'Hagan's strength and unending love in letting her son know that it is okay to stop fighting and to find peace. A must read.

The Book Of Kehls is a memoir that is honestly and bravely written. The author probes her deepest feelings about coming from a family smitten with Duchenne Muscular Dystrophy and shares her candid insights with depth as well as with humor.

The book also provides education about the disease to those that are unfamiliar with the ravaging toll it takes on its victims and their families. It helps the reader to understand the horror that living with this disease can bring, and provides insight into how families cope both effectively and ineffectively with chronic illness.

Ms. O'Hagan also gives us a glimpse of the past as she shares her childhood growing up in the 50's and 60's and in many instances with great nostalgia. This was quite enjoyable to read.

The layout of the book is very well created and the themes excellently threaded throughout. The beginning is extremely powerful as is the ending, leaving the reader to ponder life, its personal meaning and the necessity of gratitude for what many of us take for granted.

For me, the book was a quick read because it was so interesting that I couldn't stop......The cover was a beautiful, the title wonderful and the picture of the children so poignantly presented. I highly recommend The Book of Kehls for its message of love and spirit.

I just loved this book and since Mattie died i feel closer to him through the book of peoms .

Mattie has a way to going straight to the heart with his writings. How could a child have had such insight? Could it be that he was an angel sent from God to teach us all the perfect way to live life? The poems are stirring and thought- provoking, and yet are written in utter simplicity. LOVE... the true way of life. This book should be in every school, every home, every library.

What a gift Mattie Stepanek gave us with his writings. I am amazed of the wisdom this young man had. I have all of his books and when I need to find peace I read his poetry.

First of all, Mattie was an amazing child, an angel that graced us with his presence. His words, although obviously written by a child, are far more meaningful than anything I have ever read in my life. His message and attitude inspires me to this moment, and I will live my life with his smile in my mind.

To the person who wrote the terrible review... how dare you. You use the words of an ignorant miserable person, and you need Mattie's book most of all. You're honest opinion is one that should be kept to yourself, Mattie passed away this June and he was so much more than just an ordinary child. He was a gift from God and Im sorry that you are missing out on that, its an amazing gift.

Not sure if you folks know it or not, but Mattie passed away on June 22, 2004, three weeks before he would have turned 14. Christopher Cross's daughter Madison keeps his memory alive at the following website: (...) His books should be an inspiration to us all. Its not so much that his words rhyme or not .... its the meaning of the words that matters.

This is a wonderful compilation of stories that explores many different conditions of life. Whether you are facing a difficult illness , or not
this book is filled with humor ,and luminous moments. The authors included,
are adept at portraying the challenges and triumphs they have experienced.
I would recommend this book for anyone working in the health field , or anyone , who would like to enjoy a book of diverse and captivating stories.

I love the broad range of stories in My Body of Knowledge. Opening the book is like taking a seat in a spacious theater, settling in as the lights dim, and watching as one compelling story after another graces the stage. As someone who has struggled for many years with a debilitating pain condition, I savor hearing what others have to share on living with illness and disability. We all deal with such a complex range of issues, it's fascinating to see the myriad ways people navigate their lives. I love hearing folks tell it like it is, allowing their authentic voices to speak their stories. It sure makes for a great "body of knowledge"!

If you or your loved ones are coping with illness or disability, this book is a must-read! This book leads the reader through this process - from affliction, to isolation, to integration, and all other steps in between - all through the voices of those who have walked this path before. You cannot read this book and be unmoved, either through a greater recognition of yourself in these stories or through a greater understanding of those who live with illness or disability. A book you will keep forever and reach for again and again when your spirit needs rekindling.

This book solved my dilemma of how to convey the reality of chronic illness (I've had one for fifteen years) to family and friends. People often don't understand how any of us can suddenly become a member of the disabled community: an accident, illness, or errant gene is all it takes. And when it happens, no matter if it's you or someone you care about, it's a whole new world, and it's hard to know what to do. This book shows many ways to build a life, even when one is forced to rely on a body-- and sometimes mind-- that just do not work as promised. Think of this book as a travelogue. Your guides are spunky folks who have found their way. I bought a copy for everyone in my family, and I recommend it highly.

I thoroughly enjoyed this diverse collection of pieces about different states of body beingness. I didn't read it cover to cover but rather jumped around, beginning with what subjects felt most relevant to me, and soon found that all contributions had something vital to offer. I appreciated most of all the vivid descriptions of daily life, like the sounds and smells of Karen Myers' climb up a flight of stairs towards dinner, as well as others' similalrly compelling tales of dealing with life's profundities and humor without sentimentality but with much grace.

...I was curious and did read it. And I am very glad that I did. You are a very strong person and have been both a great mother and great friend for Ansel. I was touched and moved by how honestly you expressed your ongoing thoughts and feelings towards the disease and the struggle to deal with it as a mother, a wife and a friend. Indeed it is sad that Ansel or anyone for that matter has to suffer such an illness in life, but not everyone is as lucky to have a mother as strong, defiant and loyal as you, who has such a powerful means of expressing herself through writing. Your whole family must be very proud of you, especially Ansel. I am also impressed by your observations and descriptions of Ansel and how brave and strong he has been all of his life....Ansel is an optimistic skeptic, and brave at that (his will not to give up, I noticed, was something he inherited from you). Many of us, including myself, can learn from someone like him. And in the words of Ansel, "everything happens for a reason."

This book starts out more like a mystery or spy novel than the memoir it is. We are first introduced to the author, her husband and baby in a poetic first chapter. Next we are introduced to the "villain" (which turns out to be the genetic disease muscular dystrophy) only later to find out that it is not only slowly killing her beautiful child Ansel, but is also hiding inside her newly pregnant sister! We are then led through various vignettes where she describes her son's diagnosis, various treatments, and his transformation from an unusually attractive baby into a disabled child. Wolfson also describes her quest to understand the genetics of this disease where she not only gains insight into its biochemistry but also into the complicated history and dynamics of her own family. As the book concludes we find yet another transformation of Ansel from a troublesome disabled child to a quirky, intellectually gifted teenager. When I got to the end of the book I wanted another chapter to tell me what happens next to this remarkable mother and son. I was left feeling very moved, not with pity but with admiration. Talk about turning a bunch of lemons into lemonade! Anyone with chronic disease lurking in their family (and who doesn't) has got to read this book.

This book should appeal to readers who value the hard, loving truth-telling ability of the author, the mother of Ansel, a child with muscular dystrophy. I first read her essay of the same name in Best American Essays, and the book delivered a more edgy, tough potrait of the family. Admirable, credible, and hopeful, the mother is one tough customer, and so is her son. That is the key to surviving and thriving despite the woes of this debilitating, chronic illness. Ansel and his mom (and dad, and siblings) are a real family, in the best sense of the word.

Moonrise is a powerful book, beautifully written, full of forceful oppositions-health and disability, despair and joy, science and poetry. Were it a writer's imagined construct, it might be considered too calculated, too balanced between the life forces we control and those that control us. However, Moonrise is not a novel, rather a book that recalls the truism that life can be stranger than fiction. Penny Wolfson has written from the depths of her own experience a perfect parable, an inspiring story of the life of her son Ansel, rich in humor, strikingly full of unnerving Dantean imagery, and imbued with tremendous pathos. Though ostensibly concerned with Duchenne's muscular dystrophy, Moonrise is actually a story about the condition of life and its inherent struggles, speaks to anyone who ponders the eternal mysteries of why we live and how we live. In addition to describing the sobering details of genetic determinism and the wrenching realities of watching a child's body degenerate, Wolfson analyses and celebrates family and all its myriad complexities.

let me let you know, take me seriously with the stars, I really love the book. Penny sounds like someone very kind to everyone and everything, she treats everyone the right way. I still think you won't take me seriously, but you're probably right ignoring me.

Briggs-Bunting's book tackles a lot of real-life problems faced by adolescents. She has the gift, however, of solving them without lecturing or resorting to silly cliches or predictability.
With "Llama," readers get warmth, sensitivity and lots of fun without the overdose of warm-fuzzies that so many youth writers peddle. The fact that the characters are based on the author's real-life friends (two-and-four-legged) adds to the charm.
Highly recommend this.

This entertaining yet educational story is a great read for all ages. The author does a wonderful job combining animals and people both young and old and spins quite a unique tale. I applaud Ms. Briggs-Bunting for her being able to tell a not only educational but also interesting story (a rarity for today's children's authors). Excellent!

Llama on the Lam is a fabulous piece of children's literature. It is a heart warming tale about a cute llama and the adventures he has with a group of young kids. Though the book is aimed at children between the ages of 9 through 12, a person of any age will find it enjoyable. Young kids will relish the picturesque artwork, while young teens will be able to relate to the characters in the book. This is a must read for any child!

This is a story of a runaway llama and some kids who help capture it. It's a great story of friendship and there is humor in it, too.
I really enjoyed the fact there were different types of children in the story. One of the characters has Muscular Dystrophy, but he is protrayed as a real kid. In the author's note it tells the story of the real boy who is the model for the character.
The art is nice, too. The pictures of the llama are expecially good. He looks cute.

It's a great series and book.Figure skaters would love it!Tori,Nikki,Jill,Haley,Amber and Martina are fabulous skaters and characters in this book and series.More then anything they want to go to the olympics.In this book they try their hardest to make it.

I love this book!Tori, a skater on her way to the Nationals,starts feeling really low energy,and she finds out she has a rare muscle decease that could cause her to live her life stuck in a wheelchair, and never be able to skate again!Then, those awful words "to be continued" pop up! Tori has to decide wether to go to Nationals,where she could get her chance to go to the Olympics,or not! The other two books are called "Now or Never" and "Chance of a Lifetime"! Plus,at the end of the book, they say who some possible medalists at the Olympics are,like Tara Lipinski,Michelle Kwan,Nicole Bobek,Todd Eldridge and Micheal Weiss, plus stats and how the became skaters. This book is a perfect 10!!!!!!!!!!!!!!

This was a wonderful book. I really liked it a lot.I could not believe that there was a book that was better than the X files and Star Wars.

Nikki, Jill, Amber, Martina ,Tori,Haley,and Nataliea are 8 young wonderfully talentid skaters, some of them are going to the nationals.But Tori is sick really sick! She won't even tell her mom! she has to tell someone soon , and she knows it!

This book will open your mind and touch your soul. I couldn't put it down! It showed how courageous Barb is with her Muscular Dystrophy and artistry. And after reading about her college experiences and relationships, it also made me realize how much we have in common. Barb demonstrates beautifully how each one of us is in charge of our own life & success. Barb is an inspiration to me!

The author takes you on a journey, and muscular dystrophy is a part of that journey.. Her story is inspirational. She shares her enthusiasm for life and her sense of adventure. She displays her ability to move past the daily challenges of living with muscular dystrophy to do what she enjoys most - art. This book not only offers encouragement to artists but to people who struggle with moving forward with their life

By "telling it like it was and is", the author demonstrates how accepting "what is" every day, and moving on with creativity and zest for life can result in personal growth as an artist, as well as a person who encourages and inspires others to use their talents to the fullest.

In down-to-earth terms the author tells her story with simplicity, sincerity, and courage. As a person of faith, Barb shares her experiences in a way that challenges the reader to keep on keeping on with whatever life has dealt him or her. I was grateful for the chance to gain insight into the life of someone struggling with muscular dystrophy!

This book tells the story of how Muscular Dystrophy impacts the life of a woman...how the disease unavoidably molds and changes the course of her life...but more importantly, how she meets each challenge that it presents. For someone with this disease, even the small tasks that most of us take for granted require creativity and resolve to accomplish. I was actually on the edge of my seat over some of these everyday events. I was rooting for Elizabeth.

For me it is a simple story, well crafted. It gave me insight into MD that I would never have had without reading it. And perhaps most importantly, it portrays how the most difficult life becomes manageable when built on a foundation of faith in God.

Review by QUEST magazine:
In this well-written novel,the author, who has FSH muscular dystrophy, introduces Elizabeth, spirited as a child and as an adult, who's had FSHD since early childhood. The story is a tapestry woven of humor, creativity, spiritual insight, passive/aggressive acceptance, adjustment, struggle, balance, discrimination and, finally, trust.

Elizabeth becomes a teacher and dormitory manager in the inner city. As she faces a variety of challenges, she remains true to herself, motivated by her resolve to move forward even when a future doesn't seem to exist for her. Because of this resolve and her deep faith in God, she leads a life full of emotion balanced by the routine of daily living, always seeking to understand what life is about. Sound familiar?