Sara Smouther and Matt Weeks (who passed away) both have this inherited, terminal neurological illness that affects mood, movement and thinking skills.
Matt Weeks, 50 recently passed away on August 3, 2022, of a terminal neurological illness called Huntington’s disease. His wife, Sara Smouther, 38, is also diagnosed with the same illness, PEOPLE reported.
They met each other in Summerfield Health Care Center in Cloverdale, Indiana in April of 2021. Summerfield is the only residential care facility in the United States that exclusively treats Huntington's patients. Weeks had called the center home since September 2020. “I thought he was cute,” Sara recalled. "The next thing I know we talked for a long time about our careers and family.”
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
While this meet definitely set something beautiful in motion, there are important protocols in place at Summerfield. Because Huntington's causes a lack of impulse control among other cognitive issues, stage 1 is kissing and handholding. After getting permission, the couple began dating. “They became inseparable,” said Weeks' brother, Mark.
On October 29, 2021, Matt got down on one knee (with some external help, but super cute) and proposed to Sara. They got married six months later. “He gives me purpose,” Smouther said when the couple spoke to PEOPLE after their May 21, 2022, wedding. “It's a comfort to know that I have someone.” When getting their wedding bands, they got the phrase “You are my world” engraved in them.
While Weeks wasn’t able to fully communicate through this interview, only Sara, facility administrator Tasheena Duncan and other employees were able to understand him. “He's saying that he loves her,” said Duncan, who was present to help translate for Weeks. Grateful to find each other in the face of their fatal prognosis, Duncan added, “He's not lonely anymore, and he knows he is going to be with her forever in heaven.”
This relationship was good for them and the people around them definitely saw that it was helping them both. “It was something that he thought would never happen in his life,” said Mark. “They've been really good for one another.” Smouther's sister Lindsay Williams corroborated, “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.”
This Week in #HuntingtonsDisease Research!— HDSA (@HDSA) August 4, 2022
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They both had similar trajectories with the illness. Smouther was a vibrant, outgoing publishing executive before she was diagnosed. She started showing symptoms in her 20s, such as balance issues and impulsive behavior. After a few years, when she turned 30, she was diagnosed with Huntington’s disease. Both Smouther's grandmother and her father had the disease, so she and her two siblings knew from a young age they were at risk. “It's like schizophrenia, bipolar, Parkinson's, ALS, all wrapped together,” said Lindsay.
In a similar vein, Weeks was diagnosed with the disease at 34, before which he was a successful sound engineer, working with Collin Raye and Wynonna Judd. Like Smouther, he had family members with the disease, so it wasn't a surprise when his blood test came back positive. Still, Weeks struggled to accept his future. “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.”
Like Weeks, Smouther found it really difficult to accept this future, after attempting suicide in 2016, she was in and out of six facilities before ultimately finding Summerfield. But their partnership is something they both cherished enough for the doctors to also accept that it helped with their health. “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.”
“Sara was holding his hand and he went peacefully,” said Sara's mother, Terri Catino, when Weeks passed away on Wednesday. “God called him home.”
Cover Image Source: Bride and groom holding their hands together (JovanaT/Getty Images)