Paul Scharoun-DeForge died in late March, his family said in April. He was married to Kris Scharoun-DeForge.
The couple met at a dance in 1994 and eventually married. Their marriage of 25 years is believed to have been among the longest in history for two people with that genetic condition, reported The Buffalo News.
“What they did cleared the path for other couples,” Paul’s mother Lorraine DeForge told the outlet.
Many people opposed the couple’s relationship and didn’t think people with Down syndrome should get married, family members said. But relatives and friends supported their choice.
“They had a lot of struggles,” Kris’s sister, Susan Scharoun, told Today. “I saw them as individuals who should have a right to make that decision.”
They got married and lived in Syracuse, New York.
Kris loved cooking for her husband and they enjoyed bowling and dancing, in addition to spending time with family.
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. pic.twitter.com/LuJdexB4Z7
— TODAY (@TODAYshow) August 24, 2018
“They have been a role model for unconditional positive regard in a relationship,” Scharoun said. She said that they were the longest married couple with Down syndrome, just ahead of Maryanne and Tommy Pilling of the United Kingdom, who have been married for 24 years.
In Paul’s obituary, family members wrote that the couple was “the first in the United States, both with Down Syndrome, to reach their silver wedding anniversary.”
Like many adults with Down syndrome, Paul began showing signs of early-stage dementia. According to the National Institute on Aging, “People with Down syndrome are born with an extra copy of chromosome 21, which carries the APP gene.”
“This gene produces a specific protein called amyloid precursor protein (APP). Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. By age 40, almost all people with Down syndrome have these plaques, along with other protein deposits, called tau tangles, which cause problems with how brain cells function and increase the risk of developing Alzheimer’s dementia,” it stated.
The passing of Paul Scharoun-DeForge, whose historic 25-year marriage in greater #Syracuse to Kris Scharoun-DeForge – both of them born with #DownSyndrome – was powerful statement on independence and the quest for happiness. My piece for @TheBuffaloNews: https://t.co/QBfVqbsyl9
— sean kirst (@seankirst) April 2, 2019
Some 50 percent or more of people with Down syndrome will develop dementia. Scientists are studying why some people with the syndrome develop dementia while others do not.
Paul’s wife had him stay with her as long as possible, with support from workers.
Finally, he had to move into a community residence that provided intensive nursing care. Scharoun told The Buffalo News that he still spent a lot of time at the couple’s apartment. When he wasn’t there, Kris would visit him at his new home.
The couple renewed their vows in August 2018 on their 25th anniversary. Six months later, on Valentine’s Day, the couple listened as Harmony Katz, a barbershop quartet, played some of their favorite songs.
Kris recalled accepting her husband’s proposal.
“He made me laugh,” she told the Washington Post. “I looked into his eyes and saw my future, and that’s when I proposed to him. … He said yes.”
She said it was hard when her husband moved out but said he still recognized her to the end. “I was very, very upset,” she said of his death. She noted that she had recently drawn a picture of a butterfly that hung on the wall by Paul’s bed and that he loved the picture.
Now she imagines him as a butterfly.
“I think of Paul flying up in the air … and being free,” she said.