I Fight for JHD

What this episode covers

Stacey and her husband, Terry Sargent, are incredible JHD warrior parents who live outside of Atlanta, Georgia. Terry adopted Stacey's son, Cory, and served, in every sense, as Cory's father, loving him as his own child.  When Cory started school, he had some learning difficulties and a slight speech impairment. When Cory turned 8 yrs old, Stacey and Terry noticed a facial droop and drastic decline in speech. After an MRI, they were told by a neurologist that Cory had Encephalopathy….a big word for degeneration of unknown reason. After some intensive speech therapy, Cory improved. At age 10, Cory started walking on his toes. Again, Stacey and Terry took him to therapy. Cory was fitted with braces and improved. Then at age 13, he had another decline, this time affecting his posture, walking, speech, and his favorite thing, his ability to play video games. Numerous neurologists and tests later, they ended up at Children’s Healthcare of Atlanta, and again, no one believed Stacey when she told them that Cory had once played like other children, until they saw their home movies. On April 9, 2009, shortly after is 15th birthday, Cory was diagnosed with JHD. Cory was able to graduate from high school, but sadly, on December 12, 2015, he lost his battle with Juvenile Huntington's disease. When Cory was first diagnosed, Stacey and Terry promised, "As long as there is breath in our bodies, we are going to fight this with Cory, for Cory and all the others affected by this." That was the beginning of Stacey and Terry's advocacy, which includes an annual motorcycle riding event called "Cory's Crusade." Today, Stacey and Terry talk about their continued advocacy in Cory's memory. We will also hear from Cory's hospice nurse, Lanise Shortell.

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