The Forever Fix by Ricki Lewis

by Emily Willson

Book Summary

The Forever Fix is a book that tells the stories of families and the patients of gene therapy along with all the effort that went into discovering how to cure people using this method. It focuses on one main story, the story of how gene therapy gave Corey Haas his sight, along with many other mini stories. The first person to ever successfully receive gene therapy was Ashi Desilva who suffered from ADA deficiency, leaving her defenseless against infection. That happened in 1990. Between then and now many have been both treated and lost their lives in the study of gene therapy. These included Jesse Gelsinger who died due to gene therapy while being treated for OTC deficiency syndrome, Lindsey Karlin received successful gene therapy for Canavan disease, Hannah Sames who went through gene therapy, and even Lancelot the dog who was treated for LCA2, the same thing Corey suffered from, and given his sight back. All of these cases lead up to the gene therapy of Corey Haas, the youngest person to receive gene therapy, and the case that brought hope to gene therapy. Today there remains the possibility of gene therapy to treat diseases like Alzheimer's, Parkinson's, and multiple sclerosis, creating a total of 200 million people who could benefit from gene therapy.

Science Behind Gene Therapy

Most of the science involved in this book is the gene therapy that takes place in many of the patients whose stories you read. Gene therapy is the addition of new genes to someones cells to replace a mutated ones causing health problems. Corey Haas, one of the main patients in The Forever Fix suffers from leber congenital amaurosis or LCA which had left him legally blind at age seven. LCA causes a problem in the retinal pigment epithelium part of the eye, it removes wastes and cares for the cones and rods in the eye which create color and black and white vision, but most importantly it stores vitamin A using a protein called RPE65. Corey's problem was that he could not produce RPE65 so his cones and rods would shrivel away by the time he was 40 at the latest. When he was nine he took part in a clinical trial of gene therapy. In Corey's gene therapy syringes full of about 48 billion viruses, all containing a healthy RPE65 gene, were put intohis left eye into an area near the retinal pigment epithelium. This is the cell row that is unable to make the RPE65 gene in Corey's eyes which allows the eye to harness vitamin A. So basically, these viruses, containing a gene which Corey could not produce,were put into Corey's eye. BY introducing the gene that the eye lacked, the protein needed for his vision to be restored was made and he could now see. Four days after the gene therapy, Corey was able to see the sun. However, his right eye remained as bad as before since the new proteins were only introduced to his left eye. He eventually did also have his right eye done. This book taught me a lot about how gene therapy works and about a lot of genetic diseases.


Overall this book was very accurate. It correctly covered the topics and steps in gene therapy procedures as well as the correct malfunctions in gene therapy cases such as Corey's RPE65 protein, Jesse's OTC syndrome which didn't produce enough of the OTC enzyme, Hannah's GAN (giant axonal neuropathy) which causes her axons to be stuffed with a straw like material and many other patients. Much of the science in this book was backed up or obtained from the results of labs and trials of patients. It can also by backed up by websites such as Genetics Home


Overall I did enjoy this book and would recommend it to others. This book not only taught me a lot of the science behind what it took to discover gene therapy techniques and how the whole process works, but it also consists of many personal stories about people who have gone through these procedures. Reading about kids like Corey Haas, Jesse Gelsinger, and even dogs like Lancelot who were cured with gene therapy made the book much more interesting and personal. Instead of being a total science book it was like a collection of stories. However, there often were many long pages that went in depth on gene therapy and the whole process which could be confusing but overall I thought this book was good and it kept me interested so I would recommend it.