The Forever Fix, a novel by geneticist and text book author Ricki Lewis, gives an incredibly in depth look into gene therapy and the children whose lives it changed. Gene therapy is the insertion of correct and functioning DNA into a genetically diseased patient, who is typically missing an enzyme or protein due to their genetic code.
Before sharing the successful stories of gene therapy, Lewis first tells about Jesse Gelsinger’s story perhaps to show how far gene therapy has progressed. Jesse Gelsinger was born in 1981, and was an overall healthy baby despite his eating habits. Gelsinger couldn’t process most types of protein, and this was due to OTC deficiency syndrome, which was diagnosed when he was three years old. Because of the lack
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Lewis discusses two of the eight SCID variations through two children’s stories. First was David Phillip Vetter who had SCID-X1, which consists of inefficient white blood cells, resulting in a practically nonexistent immune system. Vetter spent most of his thirteen living years in a literal medical bubble, leaving only in 1983, after a failed bone marrow transplant (the transplant was, in theory, going to supply David with working white blood cells) transferred a virus his immune system couldn’t fight. The other “SCID kid” was Ashanthi (Ashi) DeSilva, who was born in 1986 with ADA-SCID. ADA-SCID is the lack of the enzyme adenosine-deaminase, which results in poisoned T-cells. In 1986, William French Anderson and his team discovered and perfected gene therapy for ADA-SCID, correcting T-cells outside the human body and safely administering them back into the body. Three years later, DeSilva, barely four years old, successfully received gene therapy, and DeSilva’s immune system became fully functional. SCID gene therapy helped pave the way for other treatments to …show more content…
Lewis details children with each disease, but one child’s story stands out. Corey Haas, born September 2000, was the first human recipient of a LCA2 gene therapy trial which revolutionized the field of gene therapy. For the first time in its field, the gene therapy was a complete success with no side effects; four days after receiving an injection of the corrected RPE65 gene, Haas was able to see light as more than just shadows. Haas and the doctors that administrated his therapy, Dr. Jean Bennett and Dr. Al Maguire, now speak at gene therapy conventions and give hope for the future to both scientists and those affected by genetic