The Jeffrey Journey

By Helen Baldwin

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... This description may be from another edition of this product.

• Format: Paperback
• Language: English
• ISBN: 1412005841
• ISBN13: 9781412005845
• Release Date: November 2003
• Publisher: Trafford Publishing
• Length: 247 Pages
• Weight: 0.85 lbs.
• Dimensions: 0.6" x 9.0" x 6.0"

Customer Reviews

Learning from the death of a child

Losing a child is one of the hardest trials any family could go through. I read this book because, I too, have buried two children. However, I did not have to go through the agnozing of fighting for my child's life. At six weeks of age, Helen had that gut nagging feeling that something was wrong with her baby to the point of making her sick which she called "ET" - extra terrified. At eight week of age little Jeffrey was diagnosed with Spinal Muscular Atrophy (SMA). He had the most severe type called Werdnig-Hoffmann or Type I. SMA is the number one gentic killer for children under the age of two. This book is Jeffrey's journey and their family's journey. Helen is blunt with what she goes through. She shares the notes she kept and the fight to keep her son alive. She questions her assignment from God. She fights to learn about the disease, and does not always just go along with protocol. There is hope. Little Jeffrey's life has not gone in vain as this mom shares his story - their story. His life was worth fighting for. At the end Helen writes a letter to our Heavenly Father . . . here is a glimpse of why Jeffrey and ALL babies are worth fighting for: "Because of Your generosity in allowing us to care for Jeffrey, we learned not only about him and his special needs, but more about You, ourselves and others. We have been reminded just how unique each and every one of us is and how blessed we all are to be part of Your plan. We also more fully appreciate Your own sacrifice to us so long ago. And so we rejoice with You and thank You for sharing Jeffrey with us and for being with us every step of this incredible journey." If you or someone you know is or has fought a battle for a child, this is a must read book.

The Jeffrey Journey

I started reading this book with my own experience of knowing someone who had lived their life with SMA and subsequently having lost that friend to Type II of the condition. Her loss had greatly influenced my decision to get involved in doing what I could for others who are living with SMA. This venture lead me indirectly to discovering The Jeffrey Journey (through the website of the Jennifer Trust for SMA in England) and Helen Baldwin's story of their family's experiences.The story begins and reads like a biography of any other American family with two children going about their daily business. Every family has highs and lows, but the birth of Jeffrey would change their lives forever. Jeffrey was born with Type I SMA, the most severe form of the condition. Babies born with this level of SMA are not expected to live beyond their 2nd birthday, as Helen and Randy were to discover. Immediately after the first round of visits to doctor's and following the diagnosis, the book reads like a rollercoaster ride of one experience after another. Contact with doctors and specialists to determine what could be done is set against a backdrop of trying to keep a level head and a sense of routine.Helen and Randy came up against obstacles from the medical profession when trying to gain information on SMA. They eventually made contact with the Families of SMA charity. This opened up a world of information and experiences from other families. Messages were exchanged via the website and new contacts with other families made.A personal note at this point I would like to interject is that I have always admired families of someone with a neuromuscular condition. I personally draw great strength from seeing the family of the friend I lost when she was just 15. We meet for the anniversaries of her birth and death, although this is something I have come to term as the "angel" anniversary.The book contains poems written by Jeffrey's brother and sister and also contains information on the various SMA charities and causes. Helen's mother even composed a CD of music for Jeffrey. This is included when you buy the book.One overriding feature of the book however, is Helen and the family's faith in God which is tested to extreme and the number of times they turned to prayer.I won't spoil the end of the book for anyone reading this, although if you have learned anything about SMA you will know how this story and others will have ended. This is definitely a must-read for anyone interested in the stories of families like Helen and Randy Baldwin or for anyone who has an interest in neuromuscular conditions. I found it a great comfort to read of other peoples' experiences and compare them to my own.

A Must Read for All

The Jeffery Journey is a must read for anyone, whether personally dealing with SMA or not. From the first page, Helen Baldwin makes you a part of this family that is dealing with things some of us can only imagine. Throughout the book I have laughed and cried (sometimes at the same time)!

The Jeffery Journa;l

This was a very well written book. I cried and laughed.