First they were diagnosed with a terminal disease, then they got married. This is their incredible love story.

After they were diagnosed with Huntington's disease, Matt Weeks and Sara Smouther's lives changed completely. But what they didn't know was that an incredible love story was waiting for them.

Matt and Smouther both thought they would never fall in love again after they were diagnosed with the terminal disease. But there was an instant connection when they first met at Summerfield Health Care Center, which specializes in taking care of residents with Huntington's disease in Cloverdale, Indiana. 

Matt died two months after he and Smouther tied the knot in May. Now Smouther wants to show the world that their love was so much more than their shared diagnosis. It is proof that, no matter what, there is always hope. 

Here is their incredible story. 

Matt was a successful audio engineer in Nashville before he was diagnosed with Huntington's in 2009.

Huntington's disease is a fatal genetic disorder that causes a person's physical, mental, and emotional abilities — including their ability to eat, walk, and talk — to deteriorate, according to Huntington's Disease Society of America. 

The disease is passed down in families and every child of a parent with Huntington's has a 50% chance of inheriting it. Symptoms commonly develop between the ages of 30 and 50, but can begin at any age. According to Mayo Clinic, the time from the first symptoms to death ranges from 10 to 30 years. 

Mark Weeks, Matt's brother, told Insider that their mother died from Huntington's disease in 2005. It was only after she began showing symptoms in the mid-1990s that the family discovered they carried the Huntington's gene.

Mark got tested for the gene in 2004 and learned he didn't carry it. But he said his brother decided to hold off and see if he developed any symptoms.

Matt had made a name for himself working with artists including Sixpence None the Richer, Wynonna Judd, and Martina McBride. But in the years before he got tested, he began experiencing symptoms that affected his ability to work with the audio equipment. 

"His life was beginning to spiral downwards," Mark said. "He realized something wasn't right, and that's why he decided to get tested." 

In 2009, at the age of 34, Matt found out he had Huntington's disease.

Mark said it was heartbreaking watching his brother deal with Huntington's disease.

"He had loved his work so much and enjoyed everything that he did," Mark said. "And, bit by bit, he lost all of that. His circle of friends got smaller and smaller, he became very self-conscious of speaking because it'd take him longer to get the words out, he became a little more socially withdrawn. To see him grow quieter and quieter and speak less and less was really sad."  

As Matt's condition continued to deteriorate, his brother brought him to Summerfield for long-term care in September 2020. But even as Matt's life dramatically changed, he always kept a positive attitude. 

"He didn't really complain about it, he just tried to find something positive every day that he could do, something that he could enjoy even if it was just watching movies or listening to music," Mark said. "He was pretty successful in keeping a positive attitude, even though he'd admit he was disappointed he was never — in his mind — going to be able to find another relationship. And that bothered him, but he tried not to complain." 

Smouther was diagnosed with Huntington's disease when she was just 30 years old.

Unlike Matt, Smouther and her two sisters knew early on that their family carried the gene. When Smouther's father tested positive after developing symptoms, she decided to get tested as well. 

Smouther went through a divorce and quit her job as a publishing executive as her symptoms began to develop. 

"We had to put a stair-lift in the house because she couldn't walk up the stairs," Terri Catino, Smouther's mother, told Insider. "She couldn't drive anymore, couldn't work anymore, couldn't take a bath on her own. She had a hard time eating and was losing her balance a lot." 

Smouther went through six different care facilities before she found her home — and the love of her life — at Summerfield in March 2021.

"When Sara was first diagnosed, she felt like everything was taken away from her because of the disease," her mother said. "She lost her marriage, her job, her driving, the ability to have children, her independence. At Summerfield, they get so much of that back because they let them be independent." 

And there was Matt, who Smouther immediately befriended. 

"She and Matt hit it off pretty much right away," Mark said. "She lightened up his whole world, he was really excited to see her and spend time with her every day." 

"When Sara and Matt first got together, speech was easy for the two of them," Tasheena Duncan, an administrator at Summerfield, told Insider. "And they could talk and talk for hours." 

Since Huntington's also affects a person's impulse control, Duncan said Summerfield has rules in place for residents who want to start a relationship. The staff supported Matt and Smouther's relationship while making sure they were moving slowly and carefully. 

"The first step is holding hands, then we have conversations about boundaries and consent, then they can kiss," Duncan said.

It wasn't long before Smouther and Matt were inseparable.

"We'd hold hands a lot, we did every activity together," Smouther told Insider. 

"We have a lot of couples, but we don't necessarily see a love like they had," Duncan said. "Their communication became almost unspoken. They could communicate with very few words, they were able to tell each other about their past, they took their time to engage with each other's families, they'd often take naps together." 

"Sara would sleep with her head on his chest and he'd rub her head or her arm," Duncan added. "And Matt would tell her how much he loved her and that she was safe." 

Matt came back out of his shell as his love with Smouther deepened.

"When Sara showed up, Matt really came to life and was much more vocal," Mark said. "Sara brought a whole new enthusiasm in him for embracing every day, she really brought Matt back into wanting to interact with the world around him." 

"Unfortunately when you get a Huntington's diagnosis it's a death sentence, but we try to focus on the time they have," Duncan said. "And anything we did, we let Matt and Sara do together — swimming, going to the children's museum, Slip 'N Slide. They would always do it together and encourage each other to try and do new things, even when it was hard." 

In October 2021, Matt asked Smouther to marry him.

Matt called his surprise proposal "Operation Get To The Chapel." Duncan, his "closest confidante" at Summerfield, helped pick out the engagement ring and they decided to plan the big moment at Summerfield's annual prom. 

Everyone joined forces to make the day extra special. Duncan found a dress for Smouther in purple, her favorite color, while Catino did her daughter's hair and makeup. It was a night that no one at Summerfield will ever forget. 

"There were twinkle lights behind them and the staff helped Matt get down on one knee," Duncan recalled. 

"I was so excited," Smouther added. "I had no clue." 

Smouther and Matt were over the moon after they got engaged.

"Matt never thought that he'd have that opportunity to have a meaningful relationship again, and here he was in Summerfield and he found someone he was just crazy about," Mark said. 

"Sara always wanted to get married again," her mother added. "She always wanted to have a good relationship. And the fact that she moved into Summerfield and was actually able to meet a fella there and fell in love with him — it just changed her whole life."

Sara Smouther and Matt Weeks spent months planning their wedding.

The couple had a hand in everything, from spending hours testing different cakes to choosing their colors and invitations. 

Smouther also took some of her friends from Summerfield to David's Bridal, where she picked out her dress. 

Matt was struggling to speak, but on the day of their wedding he clearly said "I do."

"Matt couldn't speak very well by the time they got married," Catino, Smouther's mother, said. "He didn't talk much at all. But when they were saying their vows and his brother had him say 'I do,' he said it loud and clear." 

"Matt had become really hard to understand," Mark told Insider. "I was really nervous he'd whisper 'I do,' but when I gave him that cue he said it loud and clear — the whole place heard him." 

Smouther and Matt then exchanged wedding rings, which they had designed themselves.

Inscribed inside each band were the words: "You are my world." 

Smouther's favorite memory from her wedding day was the couple's first dance.

Matt and Smouther were both in wheelchairs at the time of their wedding, but their friends and the Summerfield staff helped them stand for their first dance as husband and wife to Ed Sheeran's song "Thinking Out Loud." 

"Matt had a couple of his oldest and best friends come into town for the wedding," Mark recalled. "The staff helped Sara stand up and Matt's friends got behind him and helped him stand up, so they had their dance and it was just so touching to see them be able to have this moment — with the literal support of everyone around them." 

Not long after their wedding, Matt's health began to rapidly decline.

"The pace at which Huntington's moves is very uneven," Mark said. "I think Matt had been holding on because he really wanted to get to that wedding. But after this, without really much warning, he started a pretty dramatic decline. It was sudden enough that it came as a little bit of a surprise." 

"Matt knew he had to get to the wedding because he knew he didn't have long," Duncan said. "And Matt knew if he married Sara he would go to heaven with her and he could spend the rest of his life with her." 

 

Matt died two months after the couple's wedding. Smouther said she held her husband's hand as he took his last breaths.

Summerfield held a memorial celebration for Matt, who was 50 years old, after he died on August 3. Every resident came up and gave Smouther a hug following the service. 

Matt's ashes are now in Smouther's room and she wears his wedding ring on a necklace. 

When asked what she loved most about Matt, Smouther said he was "intelligent, interesting, accomplished, and extremely loving." 

"His life mattered," she added. 

"Matt and Sara's love was able to triumph over a horrific disease that was deteriorating both of their bodies," Duncan said. "The way that he looked at her is the way that every woman wants to be looked at. He's a very, very special guy." 

Smouther continues to advocate for education and research on Huntington's disease. And she wants to show the world that love is always possible.

"You can have this disease, but you can still find happiness," Smouther's mother Catino said. "You can still be in love, you can still live your life."

"No matter how dire the diagnosis, everyone still has an opportunity to find joy and to find love," Mark added. "Matt's whole personality and his whole life up to that point demonstrates that he was open to that possibility, and I think that's a lesson that everyone should take away. When you're alive, there's always hope."