The Life of Riley Living with Duchenne Muscular Dystrophy: Through a Mother’s Eyes
$19.95
About one out of every 5,000 boys has Duchenne, and about 20,000 babies worldwide are born with it each year. Duchenne mostly affects boys and reaches across all races and cultures. Parent Project Muscular Dystrophy (PPMD) estimates that there are about 15,000 young men, as well as a few young women, living with Duchenne today in the United States.
The Life of Riley: Living with Duchenne Muscular Dystrophy, Through A Mother’s Eyes, encapsulates the extraordinary life of someone who has faced immense challenges at a young age. Riley never gave up or lost hope that a way would be found to keep him going. It has been 31 years in the making because it took this long for Riley to allow his story to be written.
We were told Riley may need a wheelchair by the time he’s 10 years old and be dead by 17. We needed to focus on accepting this reality.
It’s a narrative of the family’s collective journey as they grew alongside Riley and learned to understand his disease. It is nothing short of a miracle for one family with two brothers with Spinal Muscular Atrophy (SMA) who are still thriving. Greg is 62, and Dave is 59 years old, while their nephew, Riley, turned 31 on April 11, 2023, battling Duchenne Muscular Dystrophy (DMD).
ASIN : B0DF6M1G17
Publisher : Dianne’s Consultant Services
Publication date : August 23, 2024
Language : English
Print length : 227 pages
ISBN-13 : 979-8989664917
Item Weight : 10.9 ounces
Dimensions : 6 x 0.52 x 9 inches
Best Sellers Rank: #1,384,900 in Books (See Top 100 in Books) #912 in Biographies of People with Disabilities (Books) #1,277 in Parenting Books on Children with Disabilities
Customer Reviews: 4.9 4.9 out of 5 stars 19 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });
9 reviews for The Life of Riley Living with Duchenne Muscular Dystrophy: Through a Mother’s Eyes
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Carol McGreevey –
Highly Recommend
In The Life of Riley: Living with Duchenne Muscular Dystrophy~ Through a Mother’s Eyes, the author’s deeply personal memoir chronicles her child’s battle with “the beast” that is Duchenne Muscular Dystrophy. This book is more than just a story of disease however; it is a testimony to the resilience and unbreakable bond between a mother and her child. The author’s perseverance in advocating for Riley both within the medical community, and in her determination to ensure a normal life for her son is truly inspiring.Despite million to one odds, the author’s family has valiantly faced the adversity of different forms of MD afflicting multiple generations of family members for more than half a century. The narrative is interspersed with practical and valuable information and resources for anyone facing the challenges of a loved one living with a genetic muscular condition.The Life of Riley leaves a lasting impact, reminding us of the importance of faith, love and always holding on to hope.
Pam C. –
A journey of love and family
An incredible journey of a family dealing with Duchenne Muscular Dystrophy. Their strength, resilience and faith is a testimony to the love they share and their quest for answers so that they can give their son the best normal life possible while dealing with this horrible disease. A truly inspiring book of hope and love. A must read, a handbook for anyone out there dealing with DMD to know they are not alone.
Jackie S –
Highly recommend, you can feel the love!
This book is very well written, you can literally feel love this family created and had for each other through every triumph. My son too has DMD, but to read about another family and what they are overcoming, made me feel blessed and fortunate even more so. It’s like I was almost reading about my own family, but looking from the outside in. Beautifully written and very compelling! Rather you know someone with a disability or not, this book is a must read for anyone who knows the love of a son or daughter.
Dani –
A must read
This book is an insight to an amazing family and their life experiences living with Duchenne Muscular Dystrophy. It is an attestation of how far parents will go to give their child every opportunity to live a full and productive life. It is informative and gives many hope. Riley’s life is truly an inspiration.
Lynnette –
What a profound book
This was a great read. You will never understand what a parent goes thought on a daily basis with their children. The author Nina opened her heart and soul about her son Riley in this book. You followed her joy and pain every step of the way. A book well worth your time.
Bonnie –
Journey of Hope
Nina has poured her grief into a positive and enlightening story about her family’s path living with neuromuscular diseases. Her son Riley had Duchennne’s Muscular Dystrophy, one of the worst of these conditions. It is a book of hope and triumph over adversity – living one’s best life despite the boulders thrown in the path. Uplifting and informative!
Rose –
A Mother’s Love Through Riley’s Battle
Just finished this touching book about a mom’s journey with her son Riley, who has Duchenne Muscular Dystrophy. It’s pretty rare – only affects like 1 in 5,000 boys. The doctors gave them some really scary news when he was young, saying he might need a wheelchair by 10 and wouldn’t live past 17. But here’s the amazing part – Riley’s now 31! The story shows how their whole family, including his uncles with SMA, grew stronger together through all the tough times. Really opened my eyes to what families dealing with muscular dystrophy go through. Made me tear up a few times!
cliff smith –
Love and HOPE
Did not know the depths of Duchenne Muscular Dystrophy ( DMD ) until reading this book. Riley conquered this disease for so long with his loving parents who provided so much LOVE and HOPE. Thank you for writing this wonderful book and giving me the insight of DMD.
Pragya –
Life is terminal, and perhaps the only solace lies in not knowing when the end will come. We drift through our days, assuming time is infinite, convinced of an average lifespan of 60 to 80 years. But what happens when that illusion shatters? What if you were born with a terminal illness? Or worse, your child was handed such a fate? Imagine the weight of a diagnosis delivered like a death sentence—cold, clinical, and unyielding—while your baby is still nestled in your arms.Nina Stuart Harrera’s The Life of Riley: Living with Duchenne Muscular Dystrophy—Through the Mother’s Eyes captures these emotions with raw honesty and poignant depth. It is a deeply personal memoir chronicling her son Riley’s battle with Duchenne Muscular Dystrophy (DMD). For Nina, chronic illnesses were not unfamiliar. She had witnessed her two brothers diagnosed with Spinal Muscular Atrophy (SMA) during her childhood. Yet fate struck again when Riley was diagnosed with DMD.What are the odds of two devastating muscular dystrophies in one family? The statistics could be calculated, but this book isn’t about numbers. It is about the challenges, resilience, advocacy, and relentless fight parents of children with rare diseases face especially after a diagnosis is announced in an outpatient department, often with a practiced detachment. Chronic illness doesn’t affect just the individual; it permeates the entire family.This memoir tells the story of a family’s determination not to let a diagnosis define their son’s life. It is about seizing every precious moment, ensuring Riley lived a fulfilling, independent life. Against all odds, Riley graduated, pursued his dreams, underwent a rare cardiac transplant that extended his life, and faced each day with dignity. The book also sheds light on the challenges a family faces when one child with a rare illness unintentionally becomes the focus, often leaving the emotional needs of “healthy” siblings in the shadows.At its core, The Life of Riley is a story of hope and perseverance. A family’s fight against an indifferent healthcare system that often treats rare diseases as a death sentence. As the author poignantly notes, “It takes a village to raise a child”, but for a child with a chronic illness, it takes a family, faith, towns across two states, schools, hospitals, and a society that is both empathetic and accommodating- which Riley and the family were fortunately blessed with.Dealing with a chronic, rare disease is an unending battle. Victories may be won, but the war is ever-present. While we cannot control the cards we are dealt, solace can be found in giving our best and refusing to let adversity define us- which this book captures beautifully.This book is pure heart. It will make you tear up at times, but it is an essential read for all.