9 years ago our beloved daughter passed away from a Prion Disease called Creutzfeldt-Jakobs Disease (CJD), a disease which is 100% fatal. We are asking for your help as we raise funds to help find a cure for this disease.
Diana was taken away from us at the age of 29. Born at the Fort Belvior Hospital in 1987, Diana spent her early years at Army posts, attending Department of Defense Schools. Her early years were at Fort Bliss, Texas and the Naval War College, at New Port, Rhode Island. From there she spent her formative years in Europe, splitting time between the Netherlands and Germany. During that time she became an accomplished musician (Piano/Clarinet), gained a working knowledge of the German Language while studying Russian, and was an ardent horse rider. Upon her return to the United States, where she attended and graduated from Chantilly High School, she gained numerous honors in music, achieving Honors Band in Fairfax County Virginia and being the concert Mistress for their concert. She was the winner of the school’s music scholarship. She attended Virginia Tech graduating in 2011 and pursued a career in the corporate world, where she was quite successful being awarded numerous promotions, bonuses and other honors. It should be added that she became an accomplished baker and cake decorator, having produced some memorable cakes.
At the height of her career and three years prior to her death changes began in her life. There were cognitive changes in her work; there were car accidents; and minor errors at work began to get worse. Concussion-like symptoms began to appear. Some of her symptoms even mimicked Alzheimer’s or Dementia. Eventually she was forced to resign and move in with her parents who became willing caretakers.
There were numerous examinations and tests resulting in misdiagnosis from numerous specialists. There were treatments and therapy, but she continued to decline. There were more examinations and theories, but her decline continued. Her motor skills declined and eventually she was robbed of independent mobility. She became completely dependent on her parents for everything to include bathing and feeding. Finally, she was admitted to Johns Hopkins Hospital where she was diagnosed with CJD within 3 days. We were told at this point that she had less than 30 days to live. Death occurred within the next two weeks.
As we reviewed our actions in trying to find a cure for Diana, we left no stone unturned. We went to every specialist, took every test, and tried every recommended treatment. Nothing worked. For our family, getting involved with Strides for CJD was an obvious and necessary way to honor our daughter and to contribute to the research aimed at treating/eliminating this 100% fatal disease. We don’t want other families to lose their loved ones to this disease which has not received the attention that it deserves.
Clarence Hunter
