Saving Ryan is so much more than a doctor’s experience of saving one child’s life. The foreword begins with Mark Dant, a patient’s father, expressing gratitude and praise for Dr. Emil Kakkis, the man who saved his son from mucopolysaccharides, which is otherwise known as MPS I. Mark’s son, Ryan, was diagnosed with this rare disease when he was four years old. It quickly became debilitating, and his doctors estimated that he wouldn’t live past the age of ten. The story begins on a positive note, with Ryan’s father acknowledging that he conquered his battle with MPS I thanks to the determined and dedicated Dr. Kakkis. The admirable doctor worked countless hours developing and testing an enzyme therapy on dogs so that he would one day be able to treat MPS I patients.
The first patient in the trial to die was a devastation; the doctor admitted that he hoped to help all of the children in the program improve and go on to live happy and full lives. Of course, a death in the trial felt like a failure to the doctor. In a letter to her parents following her death, the doctor writes, “I have to believe that there is a higher purpose for all of this, and perhaps what she has taught us about unconditional love and the precious nature of life gives us some consolation.” The patient’s parents assured him that they had no regrets in entering the enzyme therapy. Before she passed, they were able to see their daughter move more freely, breath better, and be happier at the end of her life, which they acknowledged was more than they hoped for. Although the exact cause of her death was unknown, they knew that she was better off having received the treatment.
Overall, the treatment was working; Dr. Kakkis was determined to get the therapy approved so no one would have to live with the agony of this disease. Despite all the obstacles that were in their path, Dr. Kakkis, the courageous MPS I survivors, and their resilient parents continued to fight until the drug, Aldurazyme, was federally approved. Although the reader knows of Ryan’s success at the start of the book, there are many captivating stories, humorous anecdotes, and tragic losses present throughout the story. The book is concluded with an positive and powerful update on Ryan’s brand new life, followed by the pictures and newspaper clippings collected during this long journey. My only wish is that these images and articles were inserted chronologically throughout the book instead of at the end, which would allow the reader to feel more connected to the patients and more involved in this historical moment in time.
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