After Kris and Paul Scharoun-DeForge’s first encounter back in 1988, life would never be the same again for either of them. The two were instantly smitten with each other, in fact. And speaking touchingly about that fateful meeting, Kris has since said, “I looked into Paul’s eyes and saw my future.” But before they took the step to become man and wife, Paul and Kris had to battle against the prejudices of those who believed they should never wed.
Still, even though others may have disapproved of their union, the couple were seemingly undeterred. In any case, following a five-year-courtship, Kris popped the question to Paul. “I proposed to him. I whispered in his ear, ‘Would you marry me?’ And he looked up at me with this big beautiful smile, and he shook his head. ‘Yes!’ And that’s when I knew,” Kris told CBS News in August 2019.
Then on August 13, 2018, Kris and Paul marked their silver wedding anniversary by renewing their vows. And while 25 years together is worth commemorating for any couple, the landmark was significant in yet another way. You see, to date the Scharoun-DeForges are believed to have had the longest-lasting marriage between two people with Down syndrome.
Kris and Paul were even pioneers of a sort back in 1993. That year they had first tied the knot, making them among only a handful of couples with Down syndrome to take that step together. And Kris’ sister Sharon Scharoun would later pay tribute to that union, telling her sibling, “Your marriage to Paul was one for the history books.”
That said, the Scharoun-DeForges had been battling against the odds since the beginning. Paul’s mother, Lorraine, has revealed, for instance, that some medical professionals had been pessimistic about her son’s prospects after he was born in 1963. Back then, in fact, Lorraine had been given advice that may sound rather shocking today.
“They told us not to expect much,” Lorraine said in April 2019 when recounting how doctors had spoken at the time about Paul. During her conversation with The Buffalo News, the mom even remembered the suggestion that Paul would be better off in an institution rather than with his own parents.
Fortunately, the DeForges didn’t follow that recommendation, instead choosing to take Paul home and shower him with love and affection. And theirs was a large family, as Paul was one of eight children. “We treated him like he was the world,” Paul’s brother Jerry said of his sibling to The Buffalo News. “It wasn’t like he was Down syndrome or anything else.”
Jerry was particularly close to his brother – not least because there was just 14 months in age between them. And while growing up, the boys shared the same room, in which they slept in a set of bunk beds. “[Paul] was my buddy before he was my brother. Whatever I did, he did, and whatever he did, I did,” Jerry later recalled.
Coincidentally, Kris also had seven siblings. And after she had entered the world, her parents had received similar warnings to those later given to the DeForges regarding their child’s future quality of life. But just like the other family, the Scharouns fortunately ignored any recommendations that Kris should go to a group home.
And Down syndrome itself takes its name from the man who is now considered to be its “father”: John Langdon Down. In 1866 the British medic unveiled the first accepted paper to define the syndrome’s traits, while he was also the first to recognize it as a stand-alone medical condition.
Down syndrome is hardly incredibly rare, either, as the Centers for Disease Control and Prevention reports that roughly 6,000 children a year are born with the condition in the U.S. Heredity plays a part in just 1 percent or so of these cases, too, meaning a baby with Down syndrome can be born to parents who don’t exhibit its physical traits.
Research has found, however, that the likelihood of a child developing Down syndrome is affected by one factor: the age of the mother. According to the National Down Syndrome Society (NDSS), a prospective 35-year-old mom’s chances of conceiving a baby with the condition are approximately one in 350, while that risk rises to one in 100 and one in 30 at 40 and around 45, respectively.
And Down syndrome arises as the result of the development of the body’s cells. After a child is conceived, each of its cells typically houses 46 chromosomes paired off into groups of two. An individual with Down syndrome, on the other hand, will also possess either a completely intact or an incomplete copy of chromosome 21.
Meanwhile, Down syndrome often presents itself through certain physical characteristics. A person with the condition could be shorter than average, for example, or possess lower muscle density, while slanted eyes are another widely recognized trait. It’s worth noting, however, that not all individuals with Down syndrome share the same distinguishing features.
And although people born with Down syndrome are typically also learning disabled or experience cognitive delays, this doesn’t prevent them from living often full and happy lives. Depending on their capabilities, in fact, individuals with the condition can go to school, participate in the workforce and generally make a lasting contribution to society.
Down syndrome can have an impact on physical health, however. According to the U.K.’s National Health Service, for example, approximately 50 percent of children with the condition enter the world with heart defects. Thankfully, advancements in science and medicine have at least boosted life expectancy for people with Down syndrome; today, they can expect to reach around 60 years of age.
Nonetheless, Down syndrome does boost the risk of developing certain health issues. Individuals with the condition may face hearing and vision problems, for instance, or digestive complaints. Increased likelihood of infections and young-onset dementia are also more prevalent in people with Down syndrome than those without.
Unfortunately for Paul, he would experience dementia in his fifties. Not long after he celebrated his 25th wedding anniversary with his wife, then, he relocated to a specialist care facility. And the move was particularly difficult for Kris, as it marked the first time that the couple had lived apart since they had married all those years ago.
“We had to tell [Kris that Paul wasn’t going to come back, and it became really difficult for her,” Susan explained in a May 2019 interview with Today. The pair continued to eke out time together, though, including spells at Susan’s home on Sundays. Kris and Paul also celebrated Valentine’s Day 2019 as a couple, when they were treated to a performance by a barbershop quartet. “We had some very good moments in the last year,” Susan added.
And while Paul’s health continued to decline, his wife was there for him in every way she possibly could be. “[Kris’] presence was very calming to [Paul],” her sister told Today. Sadly, though, Kris eventually had to witness her husband battle against not only a UTI but also pneumonia.
Kris herself, meanwhile, has similarly had her share of health problems. The type 1 diabetic has also fought against pneumonia, in fact, meaning she and her husband ultimately renewed their wedding vows in the chapel of the hospital that she was in at the time. Sadly, though, while Kris slowly recovered, Paul’s situation worsened.
And, tragically, 56-year-old Paul died on March 28, 2019, after more than a quarter of a century of marriage to his beloved wife. The couple’s love story had begun over three decades previously, though, and ever since the two had built a life together in their hometown of Syracuse, New York.
Kris and Paul shared hobbies, too, with the pair bowling together and showing up at local dance events. Still, both had their own separate passions. Kris is of an artistic bent, meaning she can sometimes be found crafting her own cards, while Paul was fond of fishing in the Adirondack Mountains. And it was in the Adirondacks that a portion of Paul’s ashes were spread in a poignant memorial service.
That service was presided over by Susan, who had been an important figure in Kris and Paul’s lives –and not just because she’s Kris’ sister. Thanks in part to Susan, you see, the couple were able to press ahead with their plan to get married despite the resistance they found from some quarters.
“When [Kris and Paul] were approaching the five-year engagement mark, they really wanted to get married, so we started to plan their wedding,” Scharoun later recalled to Today. Unfortunately, though, as people with Down syndrome, Kris and Paul faced plenty of obstacles before they could join together in matrimony.
Yes, even though the couple themselves were clear about wanting to wed, they faced an arduous journey to the altar. And Kris and Paul not only had to undergo marriage classes and professional counseling, but they also had to deal with people who felt that a union between two individuals with Down syndrome would ultimately be a mistake.
Susan told Today, “Yeah, there really was quite a bit of resistance [to Kris and Paul’s wedding]. There was a feeling that it was like children getting married versus two very capable adults.” In order to demonstrate to New York state officials that they were fit for marriage, in fact, Kris and Paul both had to complete assessments on their understanding of sex as well as their own wants and needs.
Owing to the pair’s learning disabilities, you see, the state needed to ascertain whether Kris and Paul recognized the ramifications of taking such a big step together. Kris’ sister also recalled that the couple had had to take classes in order to learn what was required to ace the tests.
“[Kris and Paul] had a lot of struggles,” Susan added to Today. “[But] I saw them as individuals who should have a right to make that decision.” At the same time, Scharoun has no doubts at all that marrying was what her sister had wanted all along. Kris had long dreamed of being a bride, in fact, and she had cut out pictures of wedding gowns from magazines when she was a child.
Ultimately, though, the couple tied the knot on August 13, 1993, in front of 150 friends and family at New York’s Le Moyne Manor hotel. And doing so realized a dream for Kris, it seems. “[Paul and Kris’] wedding was a wonderful affair. Kris’ main desire has always been to be a ‘me of a we,’” Susan explained to Today in 2018.
And despite any initial reservations that Kris and Paul may not have been suited to marriage, the couple’s long-lasting relationship seemingly proved the naysayers wrong. “They have been a role model for unconditional positive regard in a relationship,” Susan claimed before Paul’s death. “They have an unconditional love.”
Indeed, Susan has further emphasized just how Kris and Paul’s marriage could act as an inspiration to others. “They are role models for everybody who wants a good relationship. They were a team; they deferred to each other and looked out for each other,” Kris’ sister told The Washington Post in April 2019. Paul assisted his wife with her diabetes, for example, by keeping a record of her insulin scale and helping with blood-sugar readings.
Paul was also very understanding when Kris was distressed and was able to make the situation better with a kind word of reassurance. It seems, then, that the couple were indeed a good match. And Kris looks to have attested to that fact when she spoke to CBS News, saying, “People like us need a chance – a chance to find a man of their dreams, like I did.”
Thankfully, Kris and Paul were given that chance despite others’ misgivings. And, in fact, when Kris was asked before her marriage what she adored most about her future husband, the bride-to-be had a clear answer: their shared condition. “For us, that was a complete acceptance of self,” Susan said to The Washington Post.
And at the memorial mass for Paul, Susan summed up what Kris and Paul’s families already knew to be true. “Thanks to you and Paul, everyone here has seen what true love looks like,” she told her sister. Indeed, most couples – whatever their stripe – would likely be happy with such a touching assessment.
Yet because of the unique nature of their marriage, the Scharoun-DeForges aren’t just any old couple. “I just wanted more people to see Kris and Paul as role models for what people with disabilities can be… They had each other’s backs. They just treated each other so well,” Susan explained to Today.
Susan added, “What I hope is that other families will entertain this. You know, other people will recognize the importance of this kind of intimate love.” And perhaps to make sure they did, Kris’ sister allowed CBS News to share moments of the family memorial that was held in the Adirondack Mountains on what would have been Kris and Paul’s 26th wedding anniversary.
Understandably, Susan is a strong advocate for the rights of individuals with Down syndrome. “[People with Down syndrome] should define their own lives,” she added to Today. We should ask them more questions about what they want. They know what is good for them.”
So, what lies in store for Kris now that her beloved husband has passed away? Well, while Susan is naturally aware that her sister is still grappling with her grief, she nevertheless maintains the future need not be bleak. “Kris is surrounded by love… I am so unbelievably grateful. It will be a long time before she is completely healed, but she is slowly getting there,” she revealed.
Meanwhile, when Kris was asked by CBS News whether she believed she would ever experience happiness again, her response was bittersweet. The widow said, “To be honest, I don’t know. I just lost the man that I love, but I’m going to try.” And from a woman who was lucky enough to find true love but had to overcome many obstacles to keep it, those are words of inspiration.