My only sister, Heidi, and her husband Tory, recently received some devastating news: Tory has a very rare genetic disease called Gerstmann-Sträussler-Scheinker Disease (please see Gerstmann-Sträussler-Scheinker Disease for details).
Manifestations of this disease—balance issues, muscle coordination, speech, and cognitive function—have already significantly impacted his health and have caused some recent falls and made employment impossible.
Even sadder is that Gerstmann-Sträussler-Scheinker Disease (GSS) is untreatable and fatal. Cases have between 2-15 years from symptom onset to death. It’s been at least 2 years since Tory’s symptoms have been noticeable to family and outside observers and his balance, coordination, and mental sharpness are indeed declining.
Tory and my sister have three children, ages 6, 4, and 2, plus Tory’s two older children from his first marriage, who visit several times a year.
Our extended family is looking into all the different ways to help them as they navigate this heart-breaking news and the impending loss of their dear husband and father.
We have started this fundraiser to help raise funds to offset the expenditures from his medical appointments, aid Heidi with implementing her home business, and for estate and end-of-life preparations.
Thank you for your love and support…
