On Thanksgiving Day 1998, a geneticist called Donavon Decker and told him the lab had identified the gene that was causing his and his sisters’ muscles to slowly deteriorate. By the way, the geneticist added, this might be a good candidate for gene therapy.
Decker called back every month until April, when the researcher finally put him in touch with neurologist Jerry Mendell. Mendell said Decker could be of service — but that he couldn’t help Decker.
Gene therapy was still new and risky. No muscular dystrophy patient had ever received one. To assure safety, Mendell would only inject a tiny foot muscle. Decker wouldn’t benefit. He could be harmed and might be rendered ineligible for future gene therapies. But if it worked, it could advance the field, including for his four sisters with the disease.
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