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by Devesh Dahale (Author)
A story of the first year of life of a baby who was born with a rare birth defect which occurs with a frequency of one in approximately 5000 babies born. A vivid description of the journey of a family that was shocked and overwhelmed by the fear of the unknown, and the perils of the surgeries and treatments that would follow. A story based upon real life written by the dad about how he and his wife coped with and overcame adversity with hope, perseverance, and through learning about what would be required to have a normal and bright future for their child by bravely advocating for nothing but the best medical and functional outcome for their child. The story is a detailed account of the medical aspects (surgeries, recoveries, complications, infections, and treatment regimens) while often encountering a "not so friendly" medical system at times as well as dealing with psycho-social aspects of life as they went through this challenging journey. The book highlights a realistic account of the family's unexpected discovery of the medical challenge and also gives valuable tips and suggestions so that others may benefit from the author's experience. The epilogue takes you to the present time of writing of the book (a healthy and vibrant 15 year old young man doing great in school and sports). Learn about the journey with its trials and tribulations as experienced through the patient / parent's perspective and appreciate the blessing of a normally functioning healthy human body.
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