Searching For Every Step Finding Purpose In Living With Spinal Muscular Atrophy

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

Author : Kurt E. Beach
Publisher : Beach Publishing LLC
ISBN 13 : 9780578971971
Total Pages : 208 pages
Book Rating : 4.9/5 (719 download)

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Book Synopsis Searching For Every Step: Finding Purpose in Living With Spinal Muscular Atrophy by : Kurt E. Beach

Download or read book Searching For Every Step: Finding Purpose in Living With Spinal Muscular Atrophy written by Kurt E. Beach and published by Beach Publishing LLC. This book was released on 2021-10-15 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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

Author : Jan Grue
Publisher : FSG Originals
ISBN 13 : 0374600791
Total Pages : 272 pages
Book Rating : 4.3/5 (746 download)

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Book Synopsis I Live a Life Like Yours by : Jan Grue

Download or read book I Live a Life Like Yours written by Jan Grue and published by FSG Originals. This book was released on 2021-08-17 with total page 272 pages. Available in PDF, EPUB and Kindle. Book excerpt: "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.

Health-related Quality of Life Among Individuals Living with Spinal Muscular Atrophy

Author : Connie Dee Lamb
Publisher :
ISBN 13 :
Total Pages : 166 pages
Book Rating : 4.:/5 (32 download)

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Book Synopsis Health-related Quality of Life Among Individuals Living with Spinal Muscular Atrophy by : Connie Dee Lamb

Download or read book Health-related Quality of Life Among Individuals Living with Spinal Muscular Atrophy written by Connie Dee Lamb and published by . This book was released on 2008 with total page 166 pages. Available in PDF, EPUB and Kindle. Book excerpt:

It's One of Them!

Author : Grace Saunders
Publisher : AuthorHouse
ISBN 13 : 1496997549
Total Pages : 187 pages
Book Rating : 4.4/5 (969 download)

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Book Synopsis It's One of Them! by : Grace Saunders

Download or read book It's One of Them! written by Grace Saunders and published by AuthorHouse. This book was released on 2014-12-10 with total page 187 pages. Available in PDF, EPUB and Kindle. Book excerpt: Grace Saunders and her brother Ben were both born with the genetic disorder spinal muscular atrophy type 2/3, SMA. From her happy childhood growing up in Hertfordshire, enduring painful operations, to becoming a mom and a wife living an independent life in Coventry. Her extraordinary story of strength, not only coping with a severe physical disability, but being victim to domestic violence. Graces story also involves drugs, murder, the police investigation that was Operation Ore and the death of her brother, aged thirty. This is a womans struggle for a normal life, independence, and remarkably, having a healthy baby girl when she was told she would never be able to have children. She coped many years, being a single mother with the help of her family and personal care assistants. She writes about her education, care, and funny stories about the world of Internet dating. She tells her story with, honesty, humor, and heartfelt emotion, Grace shares the highs and lows she has faced and has come out the other side, although a little bruised, stronger than ever, and still smiling. Graces attitude to the life she has been dealt with is, as she says, Its One of Them!

Living with Spinal Muscular Atrophy

Author : Trina Allen
Publisher :
ISBN 13 : 9780595414642
Total Pages : 0 pages
Book Rating : 4.4/5 (146 download)

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Book Synopsis Living with Spinal Muscular Atrophy by : Trina Allen

Download or read book Living with Spinal Muscular Atrophy written by Trina Allen and published by . This book was released on 2006-09 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "November 3, 2003-April 27, 2004. Our love, our life, our angel. A day by day journey with SMA. Learn about SMA. See how life can change overnight. Feel the courage and strength. And much more"--Subtitles

Laughing at My Nightmare

Author : Shane Burcaw
Publisher : Macmillan
ISBN 13 : 162672007X
Total Pages : 257 pages
Book Rating : 4.6/5 (267 download)

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Book Synopsis Laughing at My Nightmare by : Shane Burcaw

Download or read book Laughing at My Nightmare written by Shane Burcaw and published by Macmillan. This book was released on 2014-10-14 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: "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"--

Embracing the Secret

Author : Courtney Frazer
Publisher :
ISBN 13 : 9781687233936
Total Pages : 78 pages
Book Rating : 4.2/5 (339 download)

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Book Synopsis Embracing the Secret by : Courtney Frazer

Download or read book Embracing the Secret written by Courtney Frazer and published by . This book was released on 2019-08-19 with total page 78 pages. Available in PDF, EPUB and Kindle. Book excerpt: Embracing the Secret is about a young woman's search for answers. Answers to a medical problem she's been searching for her entire life. Courtney will take you step by step through her journey. You'll feel like you're on the road with her. Will she be able to find the answers or be left wondering forever?

Miracle Boy Grows Up

Author : Ben Mattlin
Publisher : Skyhorse Publishing Inc.
ISBN 13 : 1616087315
Total Pages : 209 pages
Book Rating : 4.6/5 (16 download)

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Book Synopsis Miracle Boy Grows Up by : Ben Mattlin

Download or read book Miracle Boy Grows Up written by Ben Mattlin and published by Skyhorse Publishing Inc.. This book was released on 2012-08-14 with total page 209 pages. Available in PDF, EPUB and Kindle. Book excerpt: No one thought Ben Mattlin would live past childhood.But that didn t stop...

I Love Jesus, But I Want to Die

Author : Sarah J. Robinson
Publisher : WaterBrook
ISBN 13 : 0593193539
Total Pages : 257 pages
Book Rating : 4.5/5 (931 download)

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Book Synopsis I Love Jesus, But I Want to Die by : Sarah J. Robinson

Download or read book I Love Jesus, But I Want to Die written by Sarah J. Robinson and published by WaterBrook. This book was released on 2021-05-11 with total page 257 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Life Rolls on

Author : Rich Ochoa
Publisher : CreateSpace
ISBN 13 : 9781463777586
Total Pages : 170 pages
Book Rating : 4.7/5 (775 download)

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Book Synopsis Life Rolls on by : Rich Ochoa

Download or read book Life Rolls on written by Rich Ochoa and published by CreateSpace. This book was released on 2011-09-14 with total page 170 pages. Available in PDF, EPUB and Kindle. Book excerpt: When he was four years old, doctors told Duane Hale's parents that their son had Spinal Muscular Atrophy and that he wouldn't live past his teens. That was 42 years ago, and he has now outlived many of those doctors. What happens to a rambunctious little boy whose disease turns him into a man who can't move? How does someone live like that and find happiness in spite of such enormous challenges? Even as the disease paralyzes more of his body every day his spirit stays strong and Life Rolls On.

Homo Deus

Author : Yuval Noah Harari
Publisher : HarperCollins
ISBN 13 : 0062464353
Total Pages : 464 pages
Book Rating : 4.0/5 (624 download)

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Book Synopsis Homo Deus by : Yuval Noah Harari

Download or read book Homo Deus written by Yuval Noah Harari and published by HarperCollins. This book was released on 2017-02-21 with total page 464 pages. Available in PDF, EPUB and Kindle. Book excerpt: Official U.S. edition with full color illustrations throughout. NEW YORK TIMES BESTSELLER Yuval Noah Harari, author of the critically-acclaimed New York Times bestseller and international phenomenon Sapiens, returns with an equally original, compelling, and provocative book, turning his focus toward humanity’s future, and our quest to upgrade humans into gods. Over the past century humankind has managed to do the impossible and rein in famine, plague, and war. This may seem hard to accept, but, as Harari explains in his trademark style—thorough, yet riveting—famine, plague and war have been transformed from incomprehensible and uncontrollable forces of nature into manageable challenges. For the first time ever, more people die from eating too much than from eating too little; more people die from old age than from infectious diseases; and more people commit suicide than are killed by soldiers, terrorists and criminals put together. The average American is a thousand times more likely to die from binging at McDonalds than from being blown up by Al Qaeda. What then will replace famine, plague, and war at the top of the human agenda? As the self-made gods of planet earth, what destinies will we set ourselves, and which quests will we undertake? Homo Deus explores the projects, dreams and nightmares that will shape the twenty-first century—from overcoming death to creating artificial life. It asks the fundamental questions: Where do we go from here? And how will we protect this fragile world from our own destructive powers? This is the next stage of evolution. This is Homo Deus. With the same insight and clarity that made Sapiens an international hit and a New York Times bestseller, Harari maps out our future.

Better Than OK

Author : Kelly Mantoan
Publisher : Our Sunday Visitor
ISBN 13 : 168192417X
Total Pages : 126 pages
Book Rating : 4.6/5 (819 download)

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Book Synopsis Better Than OK by : Kelly Mantoan

Download or read book Better Than OK written by Kelly Mantoan and published by Our Sunday Visitor. This book was released on 2021-08-26 with total page 126 pages. Available in PDF, EPUB and Kindle. Book excerpt: “Every day is joyful. Every day is a gift. Every day I can thank God from the bottom of my heart.” Kelly Mantoan wasn’t always able to say these words. As a mother of five children, two with profound disabilities, all her energy and attention was focused on her children’s diagnoses and round the clock care. Drained and struggling, Kelly wondered if she had what it took to be the kind of parent they needed. She craved support as a Catholic mother with special-needs children, but felt lost and alone when she tried to rely on secular support groups or well-meaning friends and family who had no experience in the special-needs community. If you can relate to Kelly’s story, Better Than OK: Finding Joy with Special- Needs Children is the hope-filled book you need today. In her down-to-earth way, Kelly shares the steps parents need to take to shift their focus away from the negatives of a diagnosis and towards acceptance, renewed faith, and joy. This book is a must-read for special-needs parents, but I would recommend it to any parent who needs a dose of wisdom and encouragement. — Jen Fulwiler, bestselling author and standup comic Sometimes special-needs parents need practical tips. Sometimes we need prayers. And sometimes we just need to know that we're not alone. ... This engaging new book is a true gift to the parents of kids with special needs. — Bonnie L. Engstrom, mom of eight and author of 61 Minutes to a Miracle This book is a gem for all special-needs parents, by turns funny, poignant, and always honest. It's the book I wish my parents could've had when I was diagnosed with cystic fibrosis in the 90s. — Emily M. DeArdo, author of Living Memento Mori: My Journey Along the Way of the Cross A truly important book for Catholic parents of special-needs children, and for family members, friends, and members of parish communities who want to better understand and more effectively support them. — Kendra Tierney, author of The Catholic All Year Compendium ABOUT THE AUTHOR Kelly Mantoan is the founder of Accepting the Gift, an online apostolate that provides resources and support to Catholic special-needs parents. She also blogs at This Ain’t the Lyceum about homeschooling, special-needs parenting, and Catholic family life. She enjoys creating useful posts and resources for her followers and speaking to groups about how God’s plan for our lives is often much better than anything we can imagine.

The First Thing About You

Author : Chaz Hayden
Publisher : Candlewick Press
ISBN 13 : 1536223115
Total Pages : 369 pages
Book Rating : 4.5/5 (362 download)

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Book Synopsis The First Thing About You by : Chaz Hayden

Download or read book The First Thing About You written by Chaz Hayden and published by Candlewick Press. This book was released on 2022-09-06 with total page 369 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

We Carry Kevan

Author : Kevan Chandler
Publisher : Worthy Books
ISBN 13 : 1546014691
Total Pages : 304 pages
Book Rating : 4.5/5 (46 download)

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Book Synopsis We Carry Kevan by : Kevan Chandler

Download or read book We Carry Kevan written by Kevan Chandler and published by Worthy Books. This book was released on 2019-04-23 with total page 304 pages. Available in PDF, EPUB and Kindle. Book excerpt: A story about friendships and commitment to one another so incredible you wouldn't believe it if it wasn't true. Kevan is just one of the guys. It's impossible to know him and not become a little more excited about life. He is an inspiring man permeated by joy, unafraid of sorrow, full of vitality and life! His sense of humor is infectious and so is his story. He grew up, he says, at "belt-buckle level" and stayed there until Kevan's beloved posse decided to leave his wheelchair at the Atlanta airport, board a plane for France, and have his friends carry him around Europe to accomplish their dream to see the world together! Kevan's beloved posse traveled to Paris, England, and Ireland where, in the climax of their adventure, they scale 600 feet up to the 1,400-year-old monastic fortress of Skellig Michael. In We Carry Kevan the reader sits with Kevan, one head-level above everyone else for the first time in his life and enjoys camaraderie unlike anything most people ever experience. Along the way they encounter the curiosity and beauty of strangers, the human family disarmed by grace, and the constant love of God so rich and beautiful in the company of good friends. We Carry Kevan displays the profound power of friendship and self-sacrifice.

Spinal Muscular Atrophy

Author : Charlotte J Sumner
Publisher : Academic Press
ISBN 13 : 0128036869
Total Pages : 508 pages
Book Rating : 4.1/5 (28 download)

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Book Synopsis Spinal Muscular Atrophy by : Charlotte J Sumner

Download or read book Spinal Muscular Atrophy written by Charlotte J Sumner and published by Academic Press. This book was released on 2016-10-24 with total page 508 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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

Mackenzie's Mission

Author : Rachael Casella
Publisher : Allen & Unwin
ISBN 13 : 1760874396
Total Pages : 302 pages
Book Rating : 4.7/5 (68 download)

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Book Synopsis Mackenzie's Mission by : Rachael Casella

Download or read book Mackenzie's Mission written by Rachael Casella and published by Allen & Unwin. This book was released on 2020-06-02 with total page 302 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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

Waiting for a Miracle

Author : Cyndi Peterson MD
Publisher : Savio Republic
ISBN 13 : 168261140X
Total Pages : 240 pages
Book Rating : 4.6/5 (826 download)

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Book Synopsis Waiting for a Miracle by : Cyndi Peterson MD

Download or read book Waiting for a Miracle written by Cyndi Peterson MD and published by Savio Republic. This book was released on 2016-07-12 with total page 240 pages. Available in PDF, EPUB and Kindle. Book excerpt: One doctor’s journey of faith to save her two terminally ill baby girls. Cyndi Peterson was a successful physician, wife and mother who had everything she ever dreamed of—yet true peace continued to elude her. Her quest leads her to Medjugorje, where Mary the Mother of God is reported to appear daily. After returning home newly committed to her faith, she faces every mother’s deepest fear. Her newborn baby Kelly is terminally ill. Upon learning her next baby, Sarah, has the same diagnosis, Cyndi struggles to understand why God has asked this of her. How God moves in her life and answers her prayers will both surprise you and deepen your faith.