Searching For Every Step: Finding Purpose in Living With Spinal Muscular Atrophy
Searching For Every Step: Finding Purpose in Living With Spinal Muscular Atrophy

Author: Kurt E. Beach

Publisher: Beach Publishing LLC

Published: 2021-10-15

Total Pages: 208

ISBN-13: 9780578971971

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This inspiring memoir tells the story of a young man who is diagnosed with spinal muscular atrophy-a rare muscular disease-at a young age. In Searching for Every Step, author Kurt Beach offers his insight on the steps he took to find his true purpose in life. In his memoir, Beach recalls the steps and missteps he took in order to manage his bout with SMA and how this rare condition played a part in many decisions he made throughout his life. Despite his rare circumstances, his struggles are struggles we all face. Through his condition, he finds the courage and strength to overcome physical, emotional, and social obstacles concerning his career aspirations, schooling, romantic relationships, and even adoption. During a life changing event, Beach finds what he is missing in life. This experience not only shows him what kind of strength he has but what his true purpose in life is. Searching for Every Step delivers wisdom and inspiration to anyone who has struggled through life and gives them the inspiration to shift their focus away from their troubles and toward a more positive, faith-driven life

I Live a Life Like Yours
I Live a Life Like Yours

Author: Jan Grue

Publisher: FSG Originals

Published: 2021-08-17

Total Pages: 272

ISBN-13: 0374600791

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"A quietly brilliant book that warms slowly in the hands." —Dwight Garner, The New York Times I am not talking about surviving. I am not talking about becoming human, but about how I came to realize that I had always already been human. I am writing about all that I wanted to have, and how I got it. I am writing about what it cost, and how I was able to afford it. Jan Grue was diagnosed with spinal muscular atrophy at the age of three. Shifting between specific periods of his life—his youth with his parents and sister in Norway; his years of study in Berkeley, St. Petersburg, and Amsterdam; and his current life as a professor, husband, and father—he intersperses these histories with elegant, astonishingly wise reflections on the world, social structures, disability, loss, relationships, and the body: in short, on what it means to be human. Along the way, Grue moves effortlessly between his own story and those of others, incorporating reflections on philosophy, film, art, and the work of writers from Joan Didion to Michael Foucault. He revives the cold, clinical language of his childhood, drawing from a stack of medical records that first forced the boy who thought of himself as “just Jan” to perceive that his body, and therefore his self, was defined by its defects. I Live a Life Like Yours is a love story. It is rich with loss, sorrow, and joy, and with the details of one life: a girlfriend pushing Grue through the airport and forgetting him next to the baggage claim; schoolmates forming a chain behind his wheelchair on the ice one winter day; his parents writing desperate letters in search of proper treatment for their son; his own young son climbing into his lap as he sits in his wheelchair, only to leap down and run away too quickly to catch. It is a story about accepting one’s own body and limitations, and learning to love life as it is while remaining open to hope and discovery.

Laughing at My Nightmare
Laughing at My Nightmare

Author: Shane Burcaw

Publisher: Macmillan

Published: 2014-10-14

Total Pages: 257

ISBN-13: 162672007X

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"With acerbic wit & a hilarious voice, Shane Burcaw's YA memoir describes the challenges he faces as a 20-year-old with muscular atrophy. From awkward handshakes to trying to finding a girlfriend and everything in between"--

Miracle Boy Grows Up
Miracle Boy Grows Up

Author: Ben Mattlin

Publisher: Skyhorse

Published: 2012-08-01

Total Pages: 313

ISBN-13: 1620875144

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Ben Mattlin lives a normal, independent life. Why is that interesting? Because Mattlin was born with spinal muscular atrophy, a congenital weakness from which he was expected to die in childhood. Not only did Mattlin live through childhood, he became one of the first students in a wheelchair to attend Harvard, from which he graduated and became a professional writer. His advantage? Mattlin’s life happened to parallel the growth of the disability rights movement, so that in many ways he did not feel that he was disadvantaged at all, merely different. Miracle Boy Grows Up is a witty, unsentimental memoir that you won’t forget, told with engrossing intelligence and a unique perspective on living with a disability in the United States.

Strangers Assume My Girlfriend Is My Nurse
Strangers Assume My Girlfriend Is My Nurse

Author: Shane Burcaw

Publisher: Roaring Brook Press

Published: 2019-04-30

Total Pages: 256

ISBN-13: 1626727694

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With his signature wit, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace. On the surface, these essays are about day-to-day life as a wheelchair user with a degenerative disease, but they are actually about family, love, and coming of age. Shane Burcaw is one half of the hillarious YouTube duo, Squirmy and Grubs, which he runs with his girlfriend, now fiancee, Hannah Aylward.

I Love Jesus, But I Want to Die
I Love Jesus, But I Want to Die

Author: Sarah J. Robinson

Publisher: WaterBrook

Published: 2021-05-11

Total Pages: 257

ISBN-13: 0593193539

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A compassionate, shame-free guide for your darkest days “A one-of-a-kind book . . . to read for yourself or give to a struggling friend or loved one without the fear that depression and suicidal thoughts will be minimized, medicalized or over-spiritualized.”—Kay Warren, cofounder of Saddleback Church What happens when loving Jesus doesn’t cure you of depression, anxiety, or suicidal thoughts? You might be crushed by shame over your mental illness, only to be told by well-meaning Christians to “choose joy” and “pray more.” So you beg God to take away the pain, but nothing eases the ache inside. As darkness lingers and color drains from your world, you’re left wondering if God has abandoned you. You just want a way out. But there’s hope. In I Love Jesus, But I Want to Die, Sarah J. Robinson offers a healthy, practical, and shame-free guide for Christians struggling with mental illness. With unflinching honesty, Sarah shares her story of battling depression and fighting to stay alive despite toxic theology that made her afraid to seek help outside the church. Pairing her own story with scriptural insights, mental health research, and simple practices, Sarah helps you reconnect with the God who is present in our deepest anguish and discover that you are worth everything it takes to get better. Beautifully written and full of hard-won wisdom, I Love Jesus, But I Want to Die offers a path toward a rich, hope-filled life in Christ, even when healing doesn’t look like what you expect.

Spinal Muscular Atrophy
Spinal Muscular Atrophy

Author: Charlotte J Sumner

Publisher: Academic Press

Published: 2016-10-24

Total Pages: 508

ISBN-13: 0128036869

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Spinal Muscular Atrophy: Disease Mechanisms and Therapy provides the latest information on a condition that is characterized by motoneuron loss and muscle atrophy, and is the leading genetic cause of infant mortality. Since the identification of the gene responsible for SMA in 1995, there have been important advances in the basic understanding of disease mechanisms, and in therapeutic development. This book provides a comprehensive accounting of recent advances in basic and clinical research that covers SMA clinical features and standards of care, multifaceted aspects of SMN protein functions and SMA disease pathology, various animal models, and biomarkers, as well as current therapeutic development. This title is ideal for graduate students/postdocs and principal investigators who are already in the SMA field and need to keep updated on recent findings and approaches, and for those who are new to, or would like to join, the field. Likewise, users will find an excellent source of reading for biotech/pharma scientists, clinical researchers, and practitioners, regulators, and patients and their advocacy organizations. Furthermore, this book is a handy reference for researchers and clinicians who may want to apply the research strategies and therapeutic approaches in SMA to other rare diseases. - Provides comprehensive, up-to-date reviews by leading investigators on diverse topics of SMA, including clinical features and patient care, SMN genetics and protein functions, animal models, disease pathology and mechanisms, biomarkers, current therapeutic development, and the role of non-profit organizations in therapeutic development - Written to bridge multiple disciplines and promote better communications among basic scientists, clinical researchers, and health care providers on the latest developments in SMA - Includes outstanding questions and perspectives for future investigations and key references for additional detailed study

Neurodegeneration
Neurodegeneration

Author: Anthony Schapira

Publisher: John Wiley & Sons

Published: 2017-04-24

Total Pages: 344

ISBN-13: 0470672684

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This book unites the diverse range of complex neurodegenerative diseases into a textbook designed for clinical practice, edited by globally leading authorities on the subject. Presents a clinically oriented guide to the diseases caused by neurodegeneration Templated chapters combine clinical and research information on neurodegenerative diseases beginning with the common elements before treating each disease individually Diseases are grouped by anatomical regions of degeneration and include common disorders such as Parkinson’s Disease, Alzheimer’s Disease, Amyotrophic Lateral Sclerosis/Motor Neuron Disease, and Multiple Sclerosis as well as less common diseases Edited by globally leading authorities on the subject, and written by expert contributing authors

The First Thing About You
The First Thing About You

Author: Chaz Hayden

Publisher: Candlewick Press

Published: 2022-09-06

Total Pages: 369

ISBN-13: 1536223115

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A high school student with spinal muscular atrophy is determined to reinvent himself in a hilarious and poignant debut from an exciting new voice. When fifteen-year-old Harris moves with his family from California (home of beautiful-but-inaccessible beaches) to New Jersey (home of some much-hyped pizza and bagels), he’s determined to be known as more than just the kid in the powered wheelchair. Armed with his favorite getting-to-know-you question (“What’s your favorite color?”), he’ll weed out the incompatible people—the greens and the purples, people who are too close to his own blue to make for good friends—and surround himself with outgoing yellows, adventurous oranges, and even thrilling reds. But first things first: he needs to find a new nurse, stat, so that his mom doesn’t have to keep accompanying him to school. Enter Miranda, a young nursing student who graduated from Harris’s new high school. Beautiful, confident, and the perfect blend of orange and red, Miranda sees Harris for who he really is—funny, smart, and totally worthy of the affections of Nory Fischer, the cute girl who’s in most of his classes. With Miranda at his side, Harris soon befriends geeky Zander (yellow) and even makes headway with Nory (who stubbornly refuses to reveal her favorite color). But Miranda is fighting her own demons, and Harris starts to wonder if she truly has his best interests at heart.

Mackenzie's Mission
Mackenzie's Mission

Author: Rachael Casella

Publisher: Allen & Unwin

Published: 2020-06-02

Total Pages: 335

ISBN-13: 1760874396

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A story of triumph over adversity, the strength that can be found in love and kindness, and the power of one couple to effect positive change in the world. 'A true love story' - Mia Freedman, founder of Mamamia Rachael and Jonathan were thrilled to welcome their baby Mackenzie into the world and to start their new lives as parents. Little did they know that in a few months they would be tested to endurance and beyond. Like many other couples starting a family, Rachael and Jonathan had no idea they were both carriers for a genetic disease, and that 1 in 20 babies are affected by genetic birth defects. Their daughter was one of those babies, and Mackenzie's Mission is Rachael's beautiful and heartwarming account of Mackenzie's life, child loss, and a journey through IVF. Determined that other couples should not go through the same heartbreak, Rachael and Jonathan are now champions for genetic testing. This is a story of triumph over adversity, the strength that can be found in kindness and the power of one couple to effect positive change in the world. 'Heartbreaking and inspiring. A must read for anyone who's lost a child, loved a child, or is desperately trying to for a child. You will cry but you will also find comfort in this incredible story.' - Erin Molan, sports presenter, Nine Network 'A book about grief and finding purpose through unimaginable loss and heartbreak. Beautiful Mackenzie will continue to have a powerful impact on this world through the work of her remarkable parents.' - Libby Trickett, Olympic swimming gold medallist and author of Beneath the Surface 'The most extraordinary story of a mother's love and her daughter's legacy.' - Marcia Leone, creator of Not So Mumsy