Books About Duchenne For Children and Parents

Enjoy this hand-picked selection of books about Duchenne muscular dystrophy for children and parents.

If you would like to add a book to this list, please let us know!

Greater Than Grief: Two Brothers Against Duchenne

Written by: Christena Estby

Greater Than Grief: Two Brothers Against Duchenne chronicles one family’s journey through pregnancy loss, the stress of a NICU stay and the resulting permanent hearing loss, foster care/adoption, a rare disease diagnosis, as well as parenting, homeschooling, and a continued faith in God’s promises.

How do parents move forward with hope and purpose when children they love receive a terminal diagnosis? How does a family balance the hard work of learning and advocating and fundraising and educating while at the same time continuing to live and love and adventure together? Where do they find the strength to sometimes just get through the day when grief and sadness weigh so heavily on their heart and spirit?

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Dan & DMD: A Children’s Book on DMD

Written by: Joseph Yasmeh 

Illustrated by: Libra Yasmeh 

Dan and DMD is a children’s book all about Dan, an upbeat kid who loves to have a blast and, like many young boys, has Duchenne Muscular Dystrophy. Dan shares with his readers a look into his life and feelings. This is a great book to read with your own kids or to use in a school setting. This book is positive while informative and helps to bring understanding to Duchenne.

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The Muscle Ouchies

By: Ryan A. Nieves 

Illustrated by: Perla Jones 

“We are all different anyway, that’s what makes us special.” When Ryan learned that he had Duchenne Muscular Dystrophy his parents referred to it as the muscle ouchies. This name gave Ryan an explanation for his frequent falls and clumsiness and helps Ryan to realize that he is not to blame. Ryan is determined not to let “the muscle ouchies” get him down and he appreciates the way that DMD makes him unique. This book includes letters from Ryan and his family members which serve to exemplify the beauty of Ryan’s life despite his fight against Duchenne Muscular Dystrophy or, as Ryan calls it, “the muscle ouchies”. 

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One Wants to be a Letter

By: Jake Marrazzo 

Illustrated by: Gregor Bernard

One Wants To Be A Letter is a sweet and charming story of a number who feels a little different. One thinks letters are cool and he likes the way they can spell words when they get together. One tries his best to pretend to be a letter, but it just never works out. In the end, One discovers that being himself is the best prize of all. This book is terrific for kids and it can serve to teach all of us to appreciate our own uniqueness.

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Big H and Little h Dog

By: Victoria Smith

Illustrated by: Sketchy La Rue

Little h dog is just like all the other pups in town, except he has a condition called Duchenne that makes his muscles weak. Little h wants to run off his leash, sniff other dog behinds, chase balls and play with other dogs at the dog park. Big H, Little h’s owner, will do all he can to help Little h realize his dreams and to keep HOPE alive. Big H searches the globe to find a special veterinarian to give Little h the ability to race like the other dogs, in the form of a super-charged set of wheels.

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The Abilities In Me: Duchenne Muscular Dystrophy

By: Gemma Keir

Illustrated by: Novel Varius

The Abilities In Me – Duchenne Muscular Dystrophy is a book dedicated to children with Duchenne Muscular Dystrophy. Explore a day in the life of a young boy with Duchenne. This book is perfect for parents, teachers and children. The Abilities In Me — Duchenne Muscular Dystrophy will bring awareness to DMD and teach kids how to be supportive and kind.

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Having MD is A Lot Like Being A Rockstar (Beautifully Unique)

Written by: Dr. Kelsey M. Finn

Illustrated by: Francesca Mendenhall

Having Muscular Dystrophy Is A Lot Like Being A Rockstar is not written by a person living with muscular dystrophy but by a Geneticist and Bioethicist. This book was written by Dr. Kelsey M. Finn to help teach kids about Muscular Dystrophy. It also gives parents some helpful talking points and advice for handling conversations about DMD in a positive way. The comparisons between life as a rockstar and life with Duchenne, like equating music practice to aquatic physical therapy and stretching, is insightful and positive.

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The Push
A Story of Friendship

Written by: Patrick Gray

Illustrated by: Justin Skeesuck and Matt Waresak

John is just an ordinary kid except he uses a wheelchair to get around. John loves the Boston Red Sox, he is an expert at math and he has a habit of telling jokes to make everyone laugh. When John sees moving trucks next door and he investigates, he meets his new neighbor, Marcus. John and Marcus become fast friends over their mutual love for the Red Sox. The two friends do homework together, they watch their favorite baseball team play on the television and they go on adventures in the woods and snow. Marcus pushes while John makes both of them laugh. The Push is a sweet children’s book to remind each of us of the power of friendship.

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I’ll Push You
A Journey of 500 Miles, Two Best Friends, and One Wheelchair

By: Patrick Gray and Justin Sweesuck

I’ll Push You is the remarkable story of two life-long friends who embark on a 500-mile spiritual pilgrimage through the rough terrain of Spain, called the Camino de Santiago. The journey is not just notable for the incredible feat of pushing a wheelchair so far through such an unforgiving landscape. Through their pilgrimage, Justin, who is living with a progressive neuromuscular disorder, and his steadfast friend Justin, find that the trip is transformative for their lives as friends, husbands, fathers, sons and grandsons. In sharing their pilgrimage, we too get to be impacted by the faith, commitment and perseverance of these two friends.

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Prism: Shedding Light on Life with Duchenne

By: David K.

In Prism, David K. relates his life story with Duchenne and the reader understands that despite his physical limitations his life is no tragedy. As a mom of a kid with DMD, I found his perspective and world-view to be refreshing, enjoyable and a gift that I get to keep. David’s story follows him to college life in a dorm, where he gains independence, learns his limits, kisses a girl and eventually, starts writing the memoir that will become Prism. I learned so much about the requirements for an adult with Duchenne to live independently. While the stories David tells about his experiences with alcohol were sometimes hard to stomach as a mom, I found that I did not need to agree with all of his decisions in order to thoroughly appreciate and enjoy his story.

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The Book of Kehls

Written by: Christine Kehl O’Hagan

The Book of Kehls is a powerful memoir in which Christine Kehl O’Hagan takes her reader along on a three-generation journey of her family’s experience with Duchenne Muscular Dystrophy.

Christine Kehl O’Hagan writes that she did not believe she could handle the diagnosis of Duchenne in her beloved son Jamie, but she soon finds the tools she never realized she had. Christine compares being a “special” parent to being asked to go camping, and finding the supplies you need hidden far in the back of a closet. I found this book to be beautifully written and, in reading Christine’s story, I felt a part of her family. I shared in her joy, her sorrow, her fear and I recognized myself and my own journey as a Duchenne mom and carrier. In reading the story of Christine’s life, I found kinship with her in my own.

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Different Drummers

By: Don Caron and Lyle Hatcher

Different Drummers, a well-written, true story about two unlikely friends in Spokane, Washington in the 1960’s, one with ADHD and one with Duchenne Muscular Dystrophy. You will be inspired, laugh and cry. Lyle becomes the hero everyone needs and the book describes the beginning of the Firefighters fill the Boot campaign for Muscular Dystrophy!

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