My Mito
Directory

Online mito info all in one place

Books

Here are books featuring mito in some way. We’ve included books aimed at the general public as opposed to medical professionals. Please let us know of any more we can add.

Links will take you to the google search result for each book so you can choose your own source of further information or to purchase.

SuperCaptainBraveMan

The Adventures of SuperCaptainBraveMan
Jennifer & Paul Norman and Victor Lodevico

Link to Google Search

Book 1: A Day in The Park – SuperCaptainBraveMan helps a handicapped girl make new friends.
Book 2: A Spectrum of Love – SuperCaptainBraveMan helps a boy with autism find a unique way to express his love for his family.
Book 3: Nurses Are Amazing! – SuperCaptainBraveMan travels to NurseVille with little girl Becky to discover all the wonderful things that nurses do.
In Book 4: Down on Safari! – SuperCaptainBraveMan helps a girl with Down Syndrome find her brother.

Kyle is a boy like any other boy his age, only he has a rare condition that hinders his day-to-day physical abilities. It is when Kyle dreams that he transforms into his alter ego,! SuperCaptainBraveMan is a friend to all kids, helping them discover their own courage and strength to overcome daily challenges.

A Bike to Call Their Own

A Bike to Call Their Own
Todd Civin

Link to Google Search

Learn about the incredible real life story of Preston and the launch of Preston’s March for Energy. The story of a young man and his desire to pay it forward to assist children around the globe by gifting them assisted bicycles similar to his own. Preston’s life was different; Born with Mitochondrial Disease. That kept him on the sidelines, While his friends would skin their knees. Preston lacked the energy, But he’d watch them just the same. And dream of riding down the street On two wheels and a frame. Visit www.prestonsmarch.org to learn more and to order your copy of A Bike to Call Their Own.

David and Jenny - Learning About Mitochondrial Disease

David and Jenny: Learning about Mitochondrial Disease
Terry Simon

Link to Google Search

David and Jenny are great friends—despite their differences. They learn how to adjust how they do things so they can play together, because their friendship is worth it.

Have fun reading to your child and teaching them about diversity in an interesting way.

The Gift of the LadyBug

The Gift of the Lady Bug
Carole M Amber

Link to Google Search

A magical story of love and acceptance through the eyes of two horses who learn their son is actually a ladybug.

Inspired by the wisdom of the author’s late son, this books teaches that you are perfect exactly as you are. All profits go to helping terminally ill children and their families. “The most amazing children’s book I have ever read” – Anita Birk, Founder of Mommies of Miracles.

Carole’s son TJ died as a toddler from Leigh Syndrome (a form of mitochondrial disease).

I'll Have Mine Rare

I’ll have mine rare
Michael H. Goldberg

Link to Google Search

I’ll Have Mine Rare “Dare 2 B Diff” Does just that! A powerful story about rare diseases and embracing and appreciating the uniqueness in others.

Raisin and Rosco are children that were born RARE. They have a Rare Disease and want to fit in and be accepted by other kids. Through a neighbourhood gathering, Raisin and Rosco teach families about their rareness and how being different is what ultimately makes YOU SPECIAL!

Michael Goldberg has mitochondrial disease, which onset in adulthood in 2012. He has created his own website and non-profit charitable organisation called Hugs For Mito, Inc. www.hugsformito.com.

A Little Book About Mito

A Little Book About Mito
Martine Vanderspuy

Link to PDF Book

*NOTE FROM MY MITO MISSION* To our knowledge, this book is only available as a pdf download. Reproduced here by kind permission of Mito Foundation (Australia)

A delightfully simple story to explain mitochondrial disease (Mito). This book has proven one of the most sought-after resources from the patient and carer community. While intended for children, many adults have found this booklet most useful in coming to terms with the complexity of mitochondrial disease through the use of simple, concise language.

Mighty Mito Superhero
Makenzie Lawrey

Link to Google Search

Nine-year-old Makenzie Lawrey is a big sister on a mission to save her little brother’s life. Her quest is to raise $1 million for Mitochondrial Disease awareness. Her ultimate goal is to help find a cure. Six-year-old Gavin Lawrey The Mighty Mito Superhero has been through more blood work, diagnostic testing and doctor’s appointments than most adults could imagine. To Gavin, hospital visits and medication make up just another day in his life.

There are few physicians that actively care for Mito patients and a very limited understanding of the disease. Makenzie hopes the story of her brother’s fight for his life will bring about change and help other families dealing with Mito find some comfort in the pages of this book while sharing it with their family and friends. Gavin battles pain while teaching those around him lessons in love, laughter, and perseverance. His Mito is superimposed with seizures, tremors, pulmonary issues among other health problems. This book, written from his sister’s perspective, allows a small glimpse into this Mito warrior’s world. He is a real superhero.

Mito and Me

Mito and Me
Kate Sytsma

Link to Google Search

Learning your child has a progressive life limiting disease is one of the toughest road some parents will ever have to walk. What can make this road even more difficult is facing a disease that so many know so little about, a disease that is filled with so many unknowns itself. Mitochondrial disease is a genetic disease that results from failure of the mitochondria in your cells. Over time it can cause cell death and leads to organ system failure. Though it is not rare in occurrence, it is rarely known and often misunderstood. Childhood often brings about many changes and questions. For a child with a disease like mitochondrial disease, often those changes can come about quickly and are not typical differences that are easily relatable to their peers. Through this easy to read children’s book you will follow one small child’s inquisitive mind as she expresses the questions and observations she has discovered about herself through living with mitochondrial disease.

My Invisible Cosmic Zebra etc

My Invisible Cosmic Zebra Has Mitochondrial Disease – Now What?
Jessie Riley

Link to Google Search

If you’ve ever felt overwhelmed or clueless about how to navigate through life after being diagnosed with mitochondrial disease, an invisible illness, “My Invisible Cosmic Zebra Has Mitochondrial Disease—Now What?” is for you. Written from a non-medical perspective, teens and young adults can use the 100-page creative workbook as a resource tool for understanding the myriad of funny-but-not-so-funny non-medical challenges they might encounter after diagnosis. The workbook is full of positive ideas, coping methods, creative visualizations, colouring pages, and lots of lovable cosmic creatures who give comforting advice—all with the aim of bringing hope, humour and inspiration back into the lives of those living with mitochondrial disease.

My Mighty Mito Book

My Mighty Mito Book: A Book for Children Who Have Mitochondrial Disease
Cara Koscinski

Link to Google Search

Often, children benefit from books which explain symptoms and feelings in clear wording and bright photos. ‘My Mighty Mito’ has colorful and fun illustrations and space for your child to personalize the book in the front as well as room for your child to write his/her own feelings and symptoms to help them to know that other children go through similar experiences and that they are not alone.

‘Mighty Mito’ is what Joshua Koscinski has called his mitochondria since he was a young child. Joshua helped write this book aged 13 and has lived daily with the difficult symptoms and effects of mitochondrial disease. His desire is to help other children to know there are more kids like them out there and to not feel afraid. Cara Koscinski, MOT, OTR/L (known as The Pocket Occupational Therapist) is Joshua’s mother.

Sports Impossible

Sports Impossible
J.P. McGee & Noah Polatty

Link to Google Search

Every day Matthew watches his friend, John, play football and baseball outside with his dad. Every day, Matthew wishes he could do the same, but he realizes he’s only able to play sports in his dreams because he has mitochondrial disease. Matthew’s parents make it their mission to try to make the best out of a bad situation by showering him with gifts and special experiences. Will they be able to give him hope? Will they find something he is able to do? Or are Sports Impossible?

Adam's Journey

Adam’s Journey
Margaret M McCarthy

Link to Google Search

This is the inspirational story about a family’s two-year search for a diagnosis and a miracle to go with it. Through daily Care Pages updates, the support of a network of prayer warriors and the will to preserve, the family of eight relocated from West Michigan to Pittsburgh for ten weeks. During this time Adam received the life-giving transplantation of one-third of his mother’s liver while his father sat by his bedside night and day for forty-six days. Join Adam on this journey of a lifetime and be inspired by a family that refused to give up on the life of their little boy.

Amazing Amanda: My Journey Through Mito
Amanda Perrotta

Link to Google Search

16-year old Amanda Perrotta lost her battle with Mitochondrial Depletion Disease in November 2008, but her zest for life and her zeal to help others motivated her to write words that would be uplifting and encouraging to others with terminal illness.

Bridging the gap between dry medical texts and the lives touched by any life-stealing disease, this book serves as an insider’s guide to the road ahead for those and their families struggling with illness and as an insightful and often funny look at hospital stays, suffering, pain, denial, joy, and most of all, living life as the only cure for Mito.

Butterflies and Second Chances

Butterflies and Second Chances: A Mom’s Memoir of Love and Loss
Annette Hines

Link to Google Search

The world Annette Hines knew exploded when her infant daughter Elizabeth was diagnosed with mitochondrial disease—a degenerative, life-limiting illness. Annette’s joy quickly turned to apprehension and she knew nothing would ever be the same again. Butterflies and Second Chances is the inspiring true story of a mother’s special needs journey, and her struggle to secure the best possible life for her child in the face of bureaucratic resistance and marital crisis. It is a story of sacrifice, dedication, and the life-altering adjustments a special needs parent has to make when confronted with the unthinkable. But most of all, it’s about love and an extraordinary mother-daughter relationship that flourished without words in the darkest shadows of adversity. Annette and Elizabeth’s powerful story provides hope, solace, and a path forward for parents of special needs children, and it will resonate with families everywhere.

The Eyes and The Smiles: Inspired by a True Story
Rebecca Gill MD

Link to Google Search

As a pediatric intern, Dr. Rose Gorman takes care of Hunter Wilson, a six-month old boy suffering from a mysterious illness. She cares deeply for Hunter and his family and is present at his bedside through the most difficult times. The experiences change Rose, and she remains close friends with Hunter’s parents, Jonathan and Samantha. Rose continues her work as a pediatrician and cares for 18-year-old Hope Shields. When Hope learns she is pregnant before high school graduation, she turns to Rose for guidance. Hope’s circumstances along with Jonathan and Samantha’s journey to find meaning in times of struggle leave Rose wondering how she can best be a source of support. Rose will have to believe in the power of family and friendship and the wonder that can be found in the eyes and the smiles.

The Great Undoing and My Journey Home

The Great Undoing and My Journey Home
Susan Schreer Davis

Link to Google Search

My youngest son, Sam, hands me a DVD converted from a video recording taken years ago.

Apprehensive, I slide it into a laptop and watch the scene from my past come to life. After viewing only part of it, he exits to do homework, pauses, and quips, “What happened to you, Mom?”

Time suspends as I search for a reply.

“Life … life happened, Sam—a lot of life. Like your dad dying and you and I ending up with a genetic disorder. Muscle biopsies, spinal taps, surgeries, you know. Crazy stuff happened.”

He looks my way only somewhat understanding. His seventeen-year-old, senior-in-high-school self tries on my explanation, but it doesn’t quite fit. He can’t give in so why should I?

He continues up the stairs and I stand alone.

Alone with the reality that the hard stuff is winning. That I caved under the pressure. That my tall, blond-haired, blue-eyed son knows who I was, compared to who I am.

Green Castles
K. L. Montgomery

Link to Google Search

Fiction inspired by true events, Green Castles tells the story of three former high school best friends; Jennifer, Kat, and Michelle; who are reunited in their small Indiana hometown when Jennifer’s daughter loses her battle with mitochondrial disease.

Through a series of flashbacks to their teen days in the late 1980’s/early 1990’s, the three women learn about resilience, forgiveness, and just how strong the bonds of family and friendship truly are.

Heartsongs etc

Heart songs:
Journey Through Heartsongs
Hope Through Heartsongs
Celebrate Through Heartsongs
Loving Through Heartsongs
Reflections of A Peacemaker: A Portrait Through Heartsongs
Just Peace: A Message of Hope
Mattie J. T. Stepanek

Link to Website

*Note from My Mito Mission* This link will take you to The Mattie J. T. Stepanek Foundation Website for further details about Mattie’s extraordinary life and books.

“I write about anything that touches the essence of my existence. What I witness, what I feel, what I think, what I fear, what I treasure. I write about life, which is our greatest gift.” –Mattie Stepanek, 1990-2004.

Mattie J. T. Stepanek lived and died a child, but he had the spirit of a giant. Affected by a rare and fatal neuromuscular disease (Dysautonomic Mitochondrial Myopathy), Mattie lived almost 14 years but in that time became a poet, best-selling author, peace activist, and a prominent voice for the Muscular Dystrophy Association. Before his death in June 2004, his five volumes of Heartsongs poetry sold more than a million copies.

Reflections of a Peacemaker: A Portrait Through Heartsongs is the final collection of Heartsongs that Mattie was working on when he died. In these poems he explores disability, despair, and death but also the gifts he finds in nature, prayer, peace, and his belief in something “bigger and better than the here and now.” Mattie’s final book, “Just Peace: A Message of Hope” is a collection of peace essays and poetry, letters and photographs, and selections from several years of e-mail correspondence between Mattie and Former President Jimmy Carter.

Life, Loves and Mito

Life, Loves and Mito
Carol Williams

Link to Google Search

Memoirs of a life from childhood to adult, dealing with adversity and troubled behaviour from family members, Life, Loves and Mito describes how a young child with physical disabilities, underwent experimental surgeries, found independence, love, and a busy life of travel, work and raising a family despite having been told she couldn’t do these things.

The Life You Longer For

The Life You Longed For
Maribeth Fischer

Link to Google Search

Fiction: When every mother’s worst nightmare becomes Grace’s reality, she must examine her entire life — from the wrong choices to the right mistakes. Grace’s son Jack is a miracle. At three years old, he’s fighting a mysterious, deadly disease that his doctors predicted would kill him as a baby. Even though it was determined to be mitochondrial disease, the little-known illness remains a mystery to medicine. Grace has sat by his bedside every minute he has been in the hospital, questioned every diagnosis, every medicine – even poring over medical journals and books at home late into the night. To the world, Grace’s fierce dedication is the sole reason for her son’s survival.

But someone suspects that perhaps Jack’s disease is not what it seems. When an allegation of Munchausen Syndrome by Proxy is levelled against Grace, she begins to live in constant suspicion of everyone — from the doctors and nurses surrounding her son in the hospital to her own husband. Who could possibly think that she has been purposely making her son ill to gain attention for herself? Although her husband believes their life is exactly as it seems to the outside world, Grace knows differently. She is harbouring a secret — the adulterous affair she’s having with her first love. But perhaps her biggest betrayal of all is her shameful uncertainty about whether she’s chosen the right path, the right husband, the right life.

Living Well with Mitochondrial Disease

Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families
Cristy Balcells

Link to Google Search

Written by a parent of a child with mito who is also a nurse and patient advocate, this highly recommended book helps make sense of mitochondrial disease, an overwhelming and complex group of diagnoses that has grown exponentially in recent years. This guide is the first book about Mito written for patients and their families and helps readers understand how the mitochondria work (they are the powerhouse of the cell, providing energy for the entire body), how people with mitochondrial defects are diagnosed and treated, and how to live well when you, your child, or someone you love is struggling with disabling symptoms.

Messenger

Messenger: The Legacy of Mattie J. T. Stepanek and Heartsongs
Jeni Stepanek

Link to Google Search

Mattie Stepanek’s Heartsongs books were a phenomenon. Not only did they hit the bestseller lists, but the books-and Mattie himself- were a source of inspiration to many, and brought him major recognition. In Messenger, Jeni Stepanek shares the inspiring story of her son’s life. Mattie was born with a rare disorder called Dysautonomic Mitochondrial Myopathy, and Jeni was advised to institutionalize him. Instead, she nurtured a child who transformed his hardships into a worldwide message of peace and hope. Though Mattie suffered through his disease, his mother’s disabilities, and the loss of his three older siblings, he never abandoned his positive spirit. His Heartsong- the word he used to describe a person’s inner self-spread a philosophy that peace begins with an attitude and can spread to the entire world.

Mother's Child

Mother’s Child
Michael Conant

Link to Google Search

In just over two months, June Gallagher’s life has turned upside down; it will take a lifetime to resemble “normal” again. This is her story about overcoming the mystery of an undiagnosed disease, accusations of child abuse, and keeping her young family on an even keel while battling school and hospital officials. Her son’s life is on the line–she is determined to save him.

My Children and Mito
Catherine LaFond-Evans

Link to Google Search

Mitochondrial diseases affect at least 1 in every 4,000. Because these diseases have only recently been recognized and diagnosable by the medical community, many individuals are misdiagnosed or go undiagnosed.

Catherine LaFond-Evans is on a mission to raise awareness of mitochondrial diseases.

Her book details her family struggle with mito.

Now That I'm Here

Now That I’m Here
Amanda Sage

Link to Google Search

A touching portrait of a young girl’s struggle with disease and disability, and the life she imagines having once she’s free from her illness. Sensitive and uplifting, the book provides families and educators with an entry point into helping children understand disease—and that sometimes an end to suffering is a happy ending.

The book is a loving tribute to a young girl from Ottawa name Kate Drury, who passed away from mitochondrial disease. All profits from the sale of Now That I’m Here go to the Children’s Hospital of Eastern Ontario for research into mitochondrial disease, in honour of Kate.

Peach etc

Peach: An Exceptional Teen’s Inspiring Journey for Universal Acceptance
Jenevieve Woods, Pete Geissler

Link to Google Search

Peach – written in lyrical, soulful prose and poetry by Jenevieve ‘Peach’ Woods – is a heartfelt account of her life as the invisible girl, shunned because she is afflicted with a life-altering disease (mitochondrial neuropathy ATP deletion.) Her book is part of her mission to ‘celebrate our differences, and to treat each other with kindness and dignity’. The book demonstrates wisdom, compassion, and insight into the human condition far beyond her 18 years. She praises her mom for being her hero, her stepfather for being her rock, and her brothers for being her soul mates. She accepts the life granted her with grace and even gratitude: ‘Here is the great part: I am glad I have this disease, mostly because I have come to understand and have discovered the meaning in my life. It is to help others. I have a unique set of glasses that I wear that gives me the power to see everybody’s soul and their truest self.’

Shannon’s Gift: A Story of Love, Loss, and Recovery
Nate Bennett

Link to Google Search

* Note from My Mito Mission * This book appears to be no longer available in print – but downloadable as an ebook via Google Play (at December 2019). However, it may be worth checking for yourself if you’d like a hard copy, in case the book comes back into print.

In this raw, emotional memoir, Nate Bennett uses a blog to work through his grief over the sudden loss of his wife Shannon. He is surprised and comforted to discover a vast virtual community of support. His blog posts–alternately poignant and of dry wit–eventually attracted tens of thousands of hits and a following from readers who hadn’t even known the couple or their sons.
This unique book gives the reader a window into the starkness of a widower’s grieving experience in real time. What comes through in virtually every post is his love for Shannon as he weaves in vignettes from their life together, chronicling their love story and his efforts to recover. And in the end, with the support of his virtual community and the strength he was able to draw from remembering Shannon’s wishes for him, he finds love again.

The Sound of a Wild Snail Eating

The Sound of a Wild Snail Eating
Elisabeth Tova Bailey

Link to Google Search

While an illness keeps her bedridden, later diagnosed as mitochondrial disease, Elisabeth Bailey watches a wild snail that has taken up residence in a terrarium alongside her bed. She enters the rhythm of life of this mysterious creature, and comes to a greater understanding of her own confined place in the world.

In a work that beautifully demonstrates the rewards of closely observing nature, she shares the inspiring and intimate story of her close encounter with Neohelix albolabris a common woodland snail. Intrigued by the snail’s world from its strange anatomy to its mysterious courtship activities; she becomes a fascinated and amused observer of the snail’s curious life. The Sound of a Wild Snail Eating is an affirmation of the healing power of nature, revealing how much of the world we miss in our busy daily lives, and how truly magical it is. A remarkable journey of survival and resilience, The Sound of a Wild Snail Eating shows how a small part of the natural world can illuminate our own human existence and deepen our appreciation of what it means to be fully alive.

My Mito Mission cannot vouch for third-party content and any descriptions are taken from these sources.

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