"He gives me purpose," Smouther said at the time of their marriage. "It's a comfort to know that I have someone."
Sara Smouther, 38, first met Matt Weeks, 50, in April 2021, and almost instantly formed a connection. Smouther had recently relocated to Summerfield Health Care Center in Cloverdale, Indiana, the only residential care facility in the US that only treats patients with Huntington's disease. Since September 2020, Weeks had also made the center his home, according to PEOPLE.
Both of them were diagnosed with Huntington's disease, a rare, genetic degenrative disorder that unfortunately, does not have a cure.
Smouther found him to be attractive the first time she saw him. "I thought he was cute," Sara recalled. "The next thing I know we talked for a long time about our careers and family."
Summerfield had rules in place for people who want to get into relationships, since the condition causes people diagnosed with it to have a lack of impulse control, along with other cognitive conditions. Stage 1 is to hold hands and kiss, and once the couple got permission from the facility, they can begin dating. In no time, they were head over heels for each other. "They became inseparable," said Weeks' brother, Mark.
Eventually, with the help of the staff, Weeks went down on one knee and proposed to her on October 29, 2021. In six months, they got married in front of family and close friends. "It was something that he thought would never happen in his life," said Mark. "They've been really good for one another."
Couple With Same Terminal Illness Found 'Joy' Together and Married. She Held His Hand in His Final Moments https://t.co/Hh0mvRnxpf
— People (@people) August 3, 2022
"It gave her a renewed sense of joy to be able to be in love and have that partnership with somebody who understands what she's been through," Lindsay Williams, Smouther's sister said, praising their relationship.
Smouther was diagnosed with the condition at 30. Since both her grandmother and father had the disease, she and both her siblings knew they were at risk too. So, when her symptoms worsened, she got tested. "It's like schizophrenia, bipolar, Parkinson's, ALS, all wrapped together," said Lindsay.
But before her diagnosis, Smouther was a vibrant, outgoing publishing executive. "She was friends with everyone," said Lindsay.
But her disease made her contemplate suicide, after which she was in and out of six facilities before she ended up in Summerfield.
As for Weeks, his diagnosis came at the age of 34, when he was a successful sound engineer. Since his case was similar to Smouther's, his diagnosis did not really come as a surprise but he had a hard time accepting it. "Most people have a really hard time," said Summerfield's Medical Director John Savage. "You know what your life's going to be like, because, almost always, you've seen your parent live through it."
Over time, he deteriorated and was forced to quit a job he loved. "There's an expression in the Huntington's community which goes, 'Today is the best day of the rest of my life,' because it's just a steady decline," said Weeks' older brother Mark. "It strips away your physical abilities and your mental awareness."
Though the two of them had to sacrifice a lot in their lives because of this disease, falling in love with each other was honestly the best thing to happen to both of them. "They have such a special connection," said Dr. Christopher James, Smouther's neurologist. "It's a wonderful reminder that even though this disease, it can be so devastating, people can still experience love and friendship. It's given them a reason to keep living."
A while after their wedding on May 21, 2022, the two of them spoke about how much they meant to each other. "He gives me purpose," Smouther said at the time. "It's a comfort to know that I have someone."
Weeks also silently echoed his wife's sentiment. He was only able to speak a few words because of his condition. "He's saying that he loves her," said facility administrator Tasheena Duncan, said, adding, "He's not lonely anymore, and he knows he is going to be with her forever in heaven."
Unfortunately, their love story came to an end when Weeks passed away on August 3, 2022. "Sara was holding his hand and he went peacefully," said Sara's mother, Terri Catino about her son-in-law's demise. "God called him home."
References:
Representative Cover Image Source: Getty Images | bruce burkhardt
