On May 18, 1997, Randy and Helen Baldwin and their children, Matthew and Katie, welcomed baby Jeffrey. The exceptionally easy adjustment came to a screeching halt eight weeks later when Jeffrey was diagnosed with a 'severe case of the deadliest form' of spinal muscular atrophy (SMA), a rare, progressive genetic neuromuscular disease. In an instant, new-baby numbness was replaced with shock and despair.
Faced with the incredulous realization that their baby was expected to die within two years and that there was no treatment or cure, they took prayer and 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.
The Jeffrey Journey, based on Helen's notes, is the story of how one family rose to the challenge of making sure their sweet, happy baby had the best of whatever time he would have with his earthly family and appreciating the honor of doing so. The blessings from this assignment continue.
Your book The Jeffrey Journey was truly the best Christmas gift I have ever received. I felt as though I was reliving my own story with someone who finally knew what it was like in receiving such a diagnosis.
I truly enjoyed the humor you brought to something so devastating and it gave me tremendous strength....
I recently read the Jeffrey Journey!!!! Wonderful book. I am not much of a book person but I couldn't put it down once I started. Sorry to say but that is the first book I read cover to cover so that says alot coming from me!!!
... 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....
- Jennifer Bolen, SMA parent
- Rick Fiedler, SMA parent
- Jason Amiss, SMA 'angel' parent
I read your book in one sitting when it arrived today, and once again I was overwhelmed with feeling and tears in remembering the circumstances which allowed us to meet, and grow close. In pondering the time I was given to know Jeffrey even a little, and you and your entire family, I can only believe that I was well and truly blessed by the good God. As a nurse, I have come in contact with a great many people, and over the years many, if not most fade from memory, but not Jeffrey. I have him pictured clearly in my mind, lying on his pillow in your lap like a precious jewel the first time we met. (The book clearly explains the tiny touch of skepticism I thought I saw in your eyes that day). No wonder! I am sorry you had to once again "lead another pack" with me in it, but maybe you are meant to teach, not just the nuts and bolts of SMA, but through example, the meaning of true love. True love is what I saw, and true love is what I remember. You, your loving and protective husband (so like good St. Joseph), your generous and brave older kids, and the baby who helped everyone (and especially me) become so much more than we might have been without him. I could not know Jeffrey as you did, but I saw the fruits of his short life, and they seem to be without measure.
You will give hope and inspiration to everyone who reads and listens. Your eloquent journaling of your exceptional journey is uplifting, and despite the sad subject, a joyous map to other travelers wending their way. I thank you from the bottom of my heart.
- Mary Ward, RN (Jeffrey's hospice nurse)