Couple with Same Terminal Illness Found 'Joy' Together and Married. She Held His Hand in His Final Moments

Carla Wilson Sara Smouther and Matt Weeks

When Sara Smouther and her late husband Matt Weeks began designing his custom wedding band, the most important element to the couple was the inscription etched inside: "You are my world."

Those words held especially true for the couple, who both suffered from Huntington's Disease, an inherited, terminal neurological illness that affects mood, movement and thinking skills.

"He gives me purpose," Smouther said when the couple spoke PEOPLE after their May 21, 2022, wedding. "It's a comfort to know that I have someone."

In that interview months before his tragic death on Wednesday, Weeks quietly echoed his wife's sentiment. He was only able to speak a few words as a result of the disease, and only Smouther and the employees at Summerfield Health Care Center in Cloverdale, Indiana — where the couple then lived together — could understand him.

"He's saying that he loves her," said facility administrator Tasheena 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."

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When Smouther, 38, and Weeks, 50, first met in April 2021, the connection was instant. Smouther had just moved into Summerfield, 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."

Because Huntington's causes a lack of impulse control among other cognitive issues, Summerfield has rules in place to protect residents who want to have relationships. Stage 1 is kissing and handholding. After getting permission, the couple began dating.

"They became inseparable," said Weeks' brother, Mark.

Robert Scheer/IndyStar/USA TODAY NETWORK Sara Smouther and Matt Weeks

With help from staff, Weeks got down on one knee and proposed on Oct. 29. Six months later they exchanged vows 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."

Added Smouther's sister Lindsay Williams: "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."

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Before she began showing symptoms, including impulsive behavior and balance issues, in her 20s, Smouther was a vibrant, outgoing publishing executive. "She was friends with everyone," said Williams.

Michelle Pemberton/IndyStar/USA TODAY NETWORK Matt Weeks (center) and Sara Smouther (right) with her mother Terri Catino (left)

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. When her symptoms worsened, she got tested and was diagnosed at age 30. "It's like schizophrenia, bipolar, Parkinson's, ALS, all wrapped together," said Lindsay.

After Smouther attempted suicide in 2016, she was in and out of six facilities before ultimately finding Summerfield.

Weeks' diagnosis came at age 34. At the time he was a successful sound engineer who worked with Collin Raye and Wynonna Judd.

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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."

Michelle Pemberton/IndyStar/USA TODAY NETWORK Matt Weeks and Sara Smouther

Over time, he deteriorated and was forced to quit the 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."

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Despite all that disease has stolen from the couple, falling in love made a positive impact on 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."

When Weeks died on Wednesday, "Sara was holding his hand and he went peacefully," said Sara's mother, Terri Catino. "God called him home."