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The Jeffrey Journey

by Helen Baldwin

276 pages; quality trade paperback (softcover); catalogue #03-0953; ISBN 1-4120-0584-1; US$26.00, C$29.90, EUR21.36, £14.95

Follow a 'normal' family hurled into devastation after their baby is diagnosed with spinal muscular atrophy, a progressive neuromuscular disease. Includes original CD of songs for Jeffrey.

About the Book

In May 1997, Randy and Helen Baldwin eagerly welcomed their third child, Jeffrey, as did his older siblings, Matthew and Katie. Jeffrey's arrival, unplanned but greatly anticipated, sparked a few adjustments in this family long removed from diaper duty, but Jeffrey was obviously a special gift.

Eight weeks later, life took a completely unexpected downward spiral into the depths of despair when Jeffrey was diagnosed with Spinal Muscular Atrophy (SMA), a rare, progressive genetic neuromuscular disease with deadly ramifications. The neurologist handed over the utterly devastating news that Jeffrey had a severe case of the most destructive form without a morsel of hope that anything could be done to thwart the effects of the killer disease.

Faced with the nightmare that their baby was expected to die within two years and that there was no treatment or cure, Randy and Helen took their faith in God to a higher level and embarked on a quest to defy SMA and its stranglehold on their precious baby's life. They sought the expertise of alternative practitioners and relentlessly relied on prayers for Jeffrey's health and for strength, courage, and wisdom for themselves and their family.

The Jeffrey Journey is the story of how one family — with friends and family, prayer, and God's grace — rose to the challenge of caring for a dying child as they also realized the countless blessings left by their angel.

To hear a sample of the music included on the CD, please visit http://balderdashe.com/the-jeffrey-journey/index.html

Reviews

"Beautiful. Wondrous. Enlightening. Uplifting. Sad. Wow — it took me so many places, but left me feeling good. The music is a wonderful complement. Both of these were the kind of things the whole world needs to see, but only a select few will really understand.

My job and my life in general force me to deal with death all too often. This book will fortify me to deal with it and the folks left behind. Thanks…

Your sweet Jeffrey was sent to you for a special purpose and you have exceeded all expectations of what could come good of it. Parents of any disabled child can identify with your moments of horror and seeing that there can be someone who, at times, sees that humor is a gift from God. None of us are fully prepared for what life is going to bring us, but accepting it with grace, compassion, humor and just flat accepting it is wonderful. What you offer is hope. We all need that!!!! The many lives you have touched are better for your having been there."
-Mary Wooldridge, RN
Nurse at former Brockman School

"The Book. It is fantastic. I have been trying to think of the right adjectives and they haven't come to me yet. One of my big impressions is what a gift this will be for so many people. It is a huge contribution — one of those things that will have tremendous and far-reaching effects that you will never even be able to imagine, but must trust are there. It will undoubtedly help in the quest to overcome SMA. It will surely give comfort to MANY whose hearts have been broken by various life events (what an incredible contribution to humanity!). It is simple, in some ways, but HUGE — by sharing this, you will make quite a ripple in the lives of many. It would be my dream to leave such a legacy in life.

Reading it was both fascinating and WRENCHING. The profits of the Kleenex manufacturer (or rather their cheap competitors) will soar after my trip through the pages. And yet, after I had finished every single page (I even read EVERY name), I was surprised by a wonderful sense of calm. I thought that was so interesting in light of the peace you described after Jeffrey became an official angel.

I've decided that if anyone can read this without being strongly moved, we will promptly ship them off to med school and arrange for them to go into partnership with Dr. Usually-Right."
-Leckie Conners, friend

"After receiving my copy of The Jeffrey Journey I was hesitant to begin reading, fearing that Jeffrey Baldwin's story would bring the raw emotion of daily routine — of my own son's life and death — back to the forefront of my mind (as if it's not always there already).

What I found, instead, was a kindred spirit wrapped in a story that I could not put down! Helen Baldwin's gripping detail of her family's life, passions and tribulations, in the wake of one of the most deadly of diseases, had me turning pages at breakneck speed. I found myself constantly saying, "Just one more chapter." While this may be due to my own personal situation, Helen fluently describes her feelings and makes you feel as if you are participating in every doctor's visit, in every struggling moment, and in every family embrace.

Contrary to my original thoughts, The Jeffrey Journey should NOT be read just by SMA parents or immediate families, but also by doctors, friends, politicians and by anyone interested in reading a riveting human interest story…"
-Jason Amiss, SMA 'angel' parent
The Benjamin Foundation www.thebenjaminfoundation. org

"You've taken one of life's most difficult tasks, woven through it the threads of significance of life in general, generously shared the medical garbage (i.e. doctors' appointments, doctors' opinions, drugs, equipment, insurance, the COST of everything) that is thrown in with the disease (as if the disease isn't enough in itself) and seasoned it with a balanced dose of humor. How none of us cracks up completely and ends up 12 marbles shy of a dozen is beyond me.

I am deeply touched by the courage that Jeffrey displayed through his short life… thank you for sharing Jeffrey with us."
-Jim Gaudreau, SMA parent

About the Author

Helen Baldwin, originally from Fort Worth, Texas, lives in the mountains of North Carolina with her husband Randy, their son Matthew, a college junior, and their daughter Katie, a high school senior, with Jeffrey's spirited presence everywhere. Add one dog, one cat, two silly geese, pond critters, and assorted wildlife to the typical challenges in a 'serene' rural mountain setting, and life is never dull! Their simple but inspirational surroundings encouraged them to add a small cabin (balderdashe.com/angelmountaincabin/).

Helen is the daughter of a retired elementary school teacher and principal, the late Elton Derden, and a retired piano teacher, JoAnn. Her brother Paul is a physician and co-founder of Crossroads Medical Mission, a mobile medical unit for underserved families in the rural crannies of southwest Virginia and northeast Tennessee (crossroadsmedicalmission.org/); he is married to a professional volunteer whiz and community leader, Jaymie. They also have a son, Jonathan (on the brink of college graduation!), and a daughter, Bethany, a college freshman.

Randy is a high school physical education teacher and football coach. Not surprisingly, in this family of educators and social servants, Helen taught young children with orthopedic and multiple handicaps in Columbia, SC, for several years before retiring to Ôjust' being a mom (etc., etc., etc.).

Helen has written newsletters for the family's former lodge, occasional letters to the editor (!), and Tips for Making Music Fun & Easy!, a collaborative effort with her mother, JoAnn. The Jeffrey Journey is her first solo book.

For additional information regarding SMA:

Andrew's Buddies Corporation www.fightsma.com

Families of SMA (FSMA) www.fsma.org or www.curesma.org

The Jennifer Trust for SMA (JTSMA) www.jtsma.org.uk

Miracle for Madison www.miracleformadison.org

SMA Support www.smasupport.com

Spinal Muscular Atrophy Foundation www.smafoundation.org

In an effort to help expedite the research focused on the management and elimination of spinal muscular atrophy (SMA) and/or to assist with SMA families' myriad needs, a minimum of 10% of the profits from the sale of The Jeffrey Journey is designated for such.

Excerpts