When 56-year-old Paul Scharoun-DeForge passed away from early-onset Alzheimer’s disease in April of 2019, he left behind 59-year-old wife Kris following an impressive 25 years of marriage.
Their story may seem sweet but common, a simple testament to marriages that stay together truly until death do they part. But for the Scharoun-DeForges, their relationship faced a particular challenge from the very start—and although Paul has now passed away, their story stands as a beacon of hope for the rights of disabled persons worldwide.
On World Down Syndrome Day, we're resharing this sweet story about the DeForges who celebrated 25 years of marriage last August.
Paul and Kris met in the 1980s at a dance they were both attending, and it was love at first sight. They were engaged in 1988 after Kris unconventionally proposed to her boyfriend—but it would take them five years to finally find a way to tie the knot legally. Because although Paul and Kris made each other laugh and smile, boosting and comforting one another when they were down, the world saw them for their shared disability: both have Down syndrome, a genetic disorder that causes developmental and cognitive challenges.
New York state officials put the couple, who both hail from the small upstate town of Liverpool, through the wringer. They were forced to prove their sexual knowledge, taking classes at a local Planned Parenthood in order to pass the tests to get a marriage license.
My sister Kris and her husband Paul celebrating their 22nd Anniversary at my camp.
Kris and Paul Scharoun-Deforge celebrating their 23rd wedding anniversary at camp.
Their upbringings had encouraged them to beat the odds, though. Both of their parents, who had been prodded by doctors to send them to institutions as children, had ignored conventional advice in order to raise their children as a part of society. And in a nod to their parents’ refusal to follow the authorities’s expectations, the couple combined their last names when they wedded and put Kris’s last name first, in atypical fashion.
“The combination of the two names was just perfect,” explained Kris’s older sister, Susan Scharoun. “Our family was just so delighted to have Paul join us, and his family was delighted to have Kris join them.”
Their families believe that they were far from just a rare success story for the Down syndrome community, instead believing that they were a success story for couples everywhere. They both worked—Paul with a disability service upstate called Arc of Onondaga, and Kris for Pizza Hut and then for New York State Office for People with Developmental Disabilities—and they helped one another take care of their various medical complications from their condition, not to mention helping one another smile, laugh, and grow.
When Kris Scharoun-DeForge spotted Paul DeForge she fell in love. While many doubted them, the couple with Down syndrome just celebrated 25 years of marriage.
Posted by Today Show on Thursday, August 23, 2018
“They are role models for everybody who wants a good relationship,” said Susan Scharoun, Kris Scharoun-DeForge’s older sister, speaking with the Washington Post following Paul’s death. “They were a team: They deferred to each other and looked out for each other.”
Paul’s Alzheimer’s diagnosis was far from uncommon, as scientists believe that there’s a link between the extra genes that cause Down syndrome and the development of dementia in those who are able to live to old age. Seven in 10 adults with Down syndrome are diagnosed with dementia upon their deaths, leaving an already challenged population with even more complications as they age.
For Kris, though, her husband’s dementia never kept him from recognizing her—even as he stopped recognizing everyone else in their lives.
That kind of love sets an example for couples everywhere. Hopefully, their momentous and beautiful marriage will do more than just stand the test of time; over the years, there’s hope it will decrease the stigma for individuals with Down syndrome as they look to participate more and more in everyday society.