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Two-year-old Maxwell lives in Denver with his twin sister, Riley, his parents, Amber and Mark, and their cat, Nittany. He loves hugs, his sister and bow ties. He was born with a very rare genetic disorder that could leave him with permanent, severe intellectual and developmental disabilities, and a form of epilepsy that’s not treatable with current medications.
Only about 50 people in the world are known to share Maxwell’s problem. It’s so uncommon that it’s known only by the name of the affected gene: SLC6A1.
His mother, Amber Freed, 38, left her job as a financial analyst in 2017 to devote herself full time to fighting to make that cure possible. Maxwell is a good candidate for treatment using the emerging technology of gene therapy, in which a functioning gene is attached to a harmless virus that can carry the new gene through the body and replace the faulty one.
The Food and Drug Administration has already approved gene therapy for diseases like leukemia and lymphoma, and a team of medical researchers at the University of Texas Southwestern Medical Center in Dallas, led by Steven Gray, is already working on ways to expand its use to diseases like Maxwell’s.
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Searching For A Million-Dollar Miracle
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